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To protect kids from tobacco, pediatricians say, focus should be on quitting — or never starting | CNN

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CNN
—

Although smoking rates for adults in the US are at their lowest recorded levels, more must be done to stop children from using tobacco, according to a new set of policy statements from the American Academy of Pediatrics.

The statements, published Monday, are the association’s first tobacco policy update since 2015. They’re based on newer science and better reflect how many children now use e-cigarettes as more kid-friendly products have flooded the market.

AAP policy statements are created by expert pediatricians to help leaders craft more effective public health policy and to guide physicians on how to keep kids safe – in this case, from tobacco.

Researchers have been telling Americans for generations that tobacco products are bad for them, yet nearly 200 US children take up smoking every day, according to the US Centers for Disease Control and Prevention.

Tobacco use is the No. 1 cause of preventable death in the United States, the CDC says.

The rates of kids who use e-cigarettes are high, the AAP says, and the use of hookahs and cigars has not declined. However, the pediatricians note, traditional cigarette smoking has declined over the years.

Specifically, in 2022, nearly 5% of middle school and about 17% of high school students reported some form of current tobacco use, according to the CDC. In 2021, about 11% of middle schoolers and 34% of high schoolers said they had ever tried tobacco.

These “try rates” are important because most adult smokers started at young ages, according to the CDC.

And in smoking rates remain disproportionately high in certain communities, including those who are Black, Hispanic, Native American, Alaska Native or LGBTQ+.

In its updated policy statements, the AAP continues to encourage pediatricians to screen for tobacco use as part of a child’s regular checkup. A talk about tobacco should start no later than age 11 or 12, the report says.

For kids who want to quit tobacco, pediatricians should refer them to behavioral interventions like counseling or prescribe nicotine replacement therapy, which has been shown to be effective with children who have moderate or severe tobacco addiction.

That practice has shifted over the years, according to Dr. Susan Walley, co-author of the new policy statements. In medical school, she said, her professors didn’t talk much about smoking except to tell people to quit.

“Now, we know it’s an addiction and a chronic medical disease. Telling someone just to quit would be like telling somebody who’s diabetic, ‘you just need to think about making your blood sugar better.’ We’ve learned so much,” said Walley, a pediatrician at Children’s National in Washington, D.C.

The new report notes that children who smoke cigarettes should not be encouraged to use e-cigarettes as an alternative. Some experts have argued that e-cigarettes are a good smoking cessation tool, but the AAP says evidence is lacking.

At the checkup, pediatricians should also ask caregivers about their tobacco habits and make recommendations. Nearly 40% of kids are regularly exposed to secondhand smoke, the AAP says, and caregiver use is the biggest reason children are exposed to secondhand smoke.

In children, secondhand smoke can lead to respiratory and ear infections and asthma attacks. Since 1964, more than 2.5 million nonsmokers who didn’t smoke have died from health problems caused by exposure to secondhand smoke, according to the CDC.

The AAP is urging the US Food and Drug Administration to better regulate all tobacco and nicotine products and the federal government to fund child-specific tobacco prevention, screening and treatment programs.

Despite getting nearly $27 billion from a tobacco settlement and tobacco taxes this year, states shortchange programs designed to prevent kids from using tobacco products and help people quit, according to the Campaign for Tobacco-Free Kids.

The AAP recommends raising the prices on tobacco products, as higher prices can act as a deterrent for young users.

Taxes are also considered one of the most effective ways to reduce smoking, particularly among children, studies have found. However, Congress hasn’t raised federal tobacco taxes in 14 years. The federal cigarette tax remains $1.01 per pack, and taxes vary for other tobacco products. No state increased its cigarette taxes in 2022, either.

The AAP policy statements on tobacco recommend a total flavor ban, including menthol.

In April, the FDA proposed eliminating two tobacco products popular with children: flavored cigars and menthol cigarettes. But it could be years before that becomes a reality, as even if that rule is finalized this year, manufacturers will probably sue to keep it from going into effect.

Tobacco companies have long used menthol to mask the unpleasant flavors of their products. Studies show that it makes the products more attractive to new users and makes it harder for people to quit.

Tobacco companies are also frequently introducing flavored products in child-friendly disposable vapes in flavors like blue raspberry and sour apple.

“Sadly, they also have very, very high levels of nicotine. Just the tobacco products themselves, they have really exploded. Part of it is the lack of regulation, and then on top of that, there’s these new oral nicotine products that are unfortunately gaining a lot of popularity from our youth,” Walley said.

Walley is optimistic that more children can quit tobacco or not start in the first place, but she knows that pediatricians have their work cut out for them, based on what her sons tell her about school.

“I’m a parent of three boys, and when I hear from my boys [that] they don’t want to go to the bathroom because people will be vaping in there, it just breaks my heart that they’re not having a bathroom break all day because of that,” she said. “That kids are so addicted that they have to sneak away to the bathroom, or they are vaping in class using some covert pieces of clothing, shows this really is a public health crisis.

“We at the AAP want to make sure that people remember, this is one of the most modifiable things in terms of social determinants of health,” Walley said. “A lot of the social determinants of health, we really can’t control, but whether you use tobacco or whether you start using tobacco is something that we can do something about.”

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When children are told they were born via assisted reproduction can affect outcomes, study finds | CNN

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CNN
—

At age 14, Helen wasn’t bothered by the fact she was born via surrogacy.

“My mum is still my mum. My dad is still my dad,” she told UK researchers conducting a study on the mental health and well-being of children born through egg donation, sperm donation and surrogacy. Helen is not her real name.

“I was talking to someone at school and they said they were an accident,” 14-year-old Simon (also not his real name) told the researchers. “I know I was no accident, I was really wanted, and it makes me feel special.”

Parents worried their children may experience difficulties as a result of learning they were conceived by assisted reproduction can stop fretting — the kids are just fine, according to the study published this week after two decades in the making.

“When we began this study more than 20 years ago, there was concern the absence of a biological link between the child and the parents could have a damaging effect on their relationship and on the well-being of the child,” said lead author Susan Golombok, professor emerita of family research and former director of the Centre for Family Research at the University of Cambridge in the UK.

However, at age 20, children born via egg or sperm donation and surrogacy were psychologically well-adjusted, the study found, especially if parents told the children about their birth history before age 7.

“What this research means is that having children in different or new ways doesn’t actually interfere with how families function. Really wanting children seems to trump everything — that’s what really matters,” Golombok said.

Clinical psychologist Mary Riddle, an associate professor of psychology at Pennsylvania State University called the study “important, in that it represents research conducted over a long period of time.”

However, Riddle, who was not involved in the study, said the results aren’t completely applicable to the United States because surrogacy can be practiced differently in the UK in several ways.

Called “tummy mummies” by some of the children, surrogates in the UK may become part of the family, participating in the upbringing of the child they helped bring into the world, according to Golombok’s 2020 book, “We Are Family: The Modern Transformation of Parents and Children.”

“In the UK, intended parents often know their surrogate prior to the surrogate pregnancy whereas in the US, commercial surrogates are often matched through agencies and don’t have prior relationships with the families for whom they carry babies,” Riddle said.

It’s also more common in the UK to use “partial” surrogacy, in which surrogates are impregnated with the sperm of the intended father and are therefore the biological mother of the child, Riddle said.

“Here in the US, gestational surrogacy, where the surrogate mother has no genetic connection to the child she is carrying, is far more common and thought to be potentially less fraught with psychological and legal pitfalls,” she added.

The study, published Wednesday in the journal Developmental Psychology, followed 65 children — 22 born by surrogacy, 17 by egg donation and 26 by sperm donation — from infancy until age 20. Another 52 families who did not use any assistance were also followed. Researchers spoke to the families when the children were 1, 2, 3, 7, 10 and 14.

Young adults who learned about their biological origins before age 7 reported better relationships with their mothers, and their mothers had lower levels of anxiety and depression, the study found.

However, children born through surrogacy had some relationship issues around age 7, “which seemed to be related to their increased understanding of surrogacy at that age,” Golombok said.

“We visited the families when the children were 10, and these difficulties had disappeared,” she said. “Interestingly, the same phenomenon has been found among internationally adopted children. It may have to do with having to confront issues of identity at a younger age than other children.”

Developmentally, children begin to notice and ask questions about pregnancy between the ages of 3 and 4, said clinical psychologist Rebecca Berry, an adjunct faculty member in the department of child and adolescent psychiatry at New York University’s Grossman School of Medicine.

“To satisfy their curiosity they’ll begin to ask questions about babies and where they came from as a way of trying to understand why they are here,” said Berry, who was not involved with the study.

Children as young as 7 will already have a basic understanding of genetics, and can be surprised when they learn they aren’t genetically connected to one or both parents, said Lauri Pasch, a psychology professor at the University of California San Francisco, who specializes in infertility and family building.

“Our current thinking is that it is best for parents to share the story of donor conception with their children at a very early age, so that if I were to ask their child when they are an adult when they learned that they were donor conceived, they would respond that they ‘always knew,’” said Pasch, who was also not involved in the study, via email.

“This allows the child to grow up with the information, as opposed to learning it later in life, when it comes as a surprise or shock and can hurt their trust in their parents and their identity development,” she added.

When it came to maternal anxiety and depression, there were no differences between families formed by surrogacy and egg or sperm donation and families with children born without assisted conception. Nor were they any differences in the mothers’ relationships with their partners at home, the study found.

However, mothers who had babies via donor eggs reported less positive family relationships than mothers who used sperm donation, likely due to insecurities about lack of a genetic connection to their children, Golombok said.

Young adults conceived by sperm donation reported poorer family communication than those conceived by egg donation, the study found. That’s perhaps due to a greater reluctance on the part of fathers to disclose they are not a genetic parent, Golombok said.

Only 42% of parents who had conceived via sperm donor had revealed the child’s birth history by the time their children were age 20, compared to 88% of egg donation parents and 100% of parents who used surrogacy.

When asked, many of the children said they weren’t concerned about how they were conceived.

“A lot of the children said ‘It’s not a big deal. I’ve got more interesting things going on in my life,’ while others said ‘Actually it’s something a bit special about me. I like talking about it,’ Golombok said. “I think it’s really nice to hear from the children themselves and I don’t think any other study has done this.”

Once told, a child needs to revisit the birth history from time to time, so parents should be sure any conversation is an ongoing one, Golombok said.

“There is this idea parents will tell the child and that is it. But you need to keep having these conversations to give the child a chance to ask questions in an age appropriate way as they grow older,” she said.

“Many of the parents in our study use children’s books that were specifically designed for this purpose,” Golombok added. “Then they could bring the child’s own story into the narrative.”

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Maternity units are closing across America, forcing expectant mothers to hit the road | CNN

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CNN
—

In picturesque Bonner County, Idaho, Leandra Wright, 40, is pregnant with her seventh child.

Wright is due in August, but three weeks ago, the hospital where she had planned to deliver, Bonner General Health, announced that it would be suspending its labor and delivery services in May.

Now, she’s facing a potentially precarious drive to another hospital 45 minutes from her home.

“It’s frustrating and worrisome,” Wright said.

Wright has a history of fast labors. Her 15-year-old son, Noah, was born on the way to the hospital.

“My fifth child was born on the side of the highway,” Wright said. “It was wintertime, and my hospital at the time in California was about 40 minutes away, and the roads were icy, so we didn’t make it in time.”

By the time she and Noah got to the hospital, about 15 minutes after he was born, his body temperature was lower than normal.

“It worries me not to have a doctor there and worries me to have to go through that,” Wright said.

Residents of Bonner County aren’t the only ones dealing with unexpected maternity unit closures.

Since 2011, 217 hospitals in the United States have closed their labor and delivery departments, according to a report by the health care consulting firm Chartis.

A CNN tally shows that at least 13 such closures have been announced in the past year alone.

Services provided at maternity units vary from hospital to hospital. Most offer obstetrics care in which an obstetrician will deliver a baby, either vaginally or via cesarean section. These units also provide perinatal care, which is medical and supportive care before and after delivery.

Other services provided may include lactation specialists and private delivery rooms.

After May 19, Bonner General Health will no longer offer obstetrical services, meaning there will be zero obstetricians practicing there. Consequently, the hospital will no longer deliver babies. Additionally, the unit will no longer provide 24-hour anesthesia support or post-resuscitation or pre-transportation stabilization care for critically ill newborns.

Some hospitals that have recently closed their maternity units still offer perinatal care, along with routine gynecological care.

Bonner General is planning to establish a clinic where perinatal care will be offered. Gynecological services – such as surgical services, preventative care, wellness exams and family planning – will still be provided at a nearby women’s health clinic.

The Chartis report says that the states with the highest loss of access to obstetrical care are Minnesota, Texas, Iowa, Kansas and Wisconsin, with each losing more than 10 facilities.

Data released last fall by the infant and maternal health nonprofit March of Dimes also shows that more than 2.2 million women of childbearing age across 1,119 US counties are living in “maternity care deserts,” meaning their counties have no hospitals offering obstetric care, no birth centers and no obstetric providers.

Maternity care deserts have been linked to a lack of adequate prenatal care or treatment for pregnancy complications and even an increased risk of maternal death for a year after giving birth.

Money is one reason why maternity units are being shuttered.

According to the American Hospital Association, 42% of births in the US are paid for by Medicaid, which has low reimbursement rates. Employer-sponsored insurance pays about $15,000 for a delivery, and Medicaid pays about $6,500, according to the Health Care Cost Institute, a nonprofit that analyzes health care cost and utilization data.

“Medicaid funds about half of all births nationally and more than half of births in rural areas,” said Dr. Katy Kozhimannil, a public health researcher at the University of Minnesota who has conducted research on the growing number of maternity care deserts.

Kozhimannil says communities that are most likely to be affected by maternity unit closures tend to be remote towns in rural counties in states with “less generous Medicaid programs.”

Hospitals in larger cities are often able to offset low reimbursement rates from Medicaid births with births covered by employer-sponsored insurance, according to Dr. Sina Haeri, a maternal-fetal medicine specialist and CEO of Ouma Health, a company that provides virtual prenatal and perinatal care to mothers living in maternity care deserts.

Many large hospitals also have neonatal intensive care units.

“If you have a NICU, that’s a substantial revenue generator for a hospital,” Haeri said.

Most rural hospitals do not have a NICU, only a nursery where they care for full-term, healthy babies, he said. Due to that financial burden, it does not make financial sense for many rural hospitals to keep labor and delivery units open.

A low volume of births is another reason for the closures.

In announcing the closure, Bonner General noted that in 2022, it delivered just 265 babies, which the hospital characterized as a significant decrease.

Rural hospital administrators providing obstetric care say it takes at least 200 births annually for a unit to remain safe and financially viable, according to a study led by Kozhimannil for the University of Minnesota’s Rural Health Research Center.

Many administrators surveyed said they are working to keep units open despite low birth rates.

“Of all the folks that we surveyed, about a third of them were still operating, even though they had fewer than 200 births a year,” Kozhimannil said. “We asked why, and they said, ‘because our community needs it.’ ”

Another issue for hospital administrators is staffing and recruitment.

The decision to close Bonner General’s labor and delivery unit was also directly affected by a lack of experienced, qualified doctors and nurses in the state, said Erin Binnall, a Bonner General Health spokesperson.

“After May 19th, Bonner General Health will no longer have reliable, consistent pediatric coverage to manage neonatal resuscitations and perinatal care. Bonner General’s number one priority is patient safety. Not having board-certified providers certified in neonatal resuscitation willing to provide call and be present during deliveries makes it unsafe and unethical for BGH to provide these services,” Binnall told CNN by email.

The American Hospital Association acknowledges the staffing challenges some hospitals face.

“Simply put, if a hospital cannot recruit and retain the providers, nurses, and other appropriately trained caregivers to sustainably support a service then it cannot provide that care,” the association said in a statement. “Such challenges are only magnified in rural America, where workforce strain is compounded by aging demographics that in some communities has dramatically decreased demand for services like Labor and Delivery.”

Wright is considering moving because of the lack of maternity and pediatric care available in Bonner County.

More stringent abortion laws may be playing a role in the closures, too.

Bonner General said in a news release last month that due to Idaho’s “legal and political climate, highly respected, talented physicians are leaving. In addition, the Idaho Legislature continues to introduce and pass bills that criminalize physicians for medical care nationally recognized as the standard of care.”

According to the Guttmacher Institute, Idaho has one of the strictest anti-abortion laws in the country: a complete ban that has only a few exceptions.

Idaho requires an “affirmative defense,” Guttmacher says, meaning a provider “has to prove in court that an abortion met the criteria for a legal exception.”

No matter the reason, Kozhimannil said, closures in rural communities aren’t just a nuisance. They also put families at risk.

“That long drive isn’t just an inconvenience. It actually is associated with health risks,” she said. “The consequence that we saw is an increase in preterm births. Preterm birth is the largest risk factor for infant mortality. It is a huge risk factor for developmental and cognitive delays for kids.”

Haeri says the decline in maternal care also has a clear effect on maternal mortality rates.

The maternal death rate for 2021 – the year for which the most recent data is available – was 32.9 deaths per 100,000 live births in the US, compared with rates of 20.1 in 2019 and 23.8 in 2020, according to a report from the National Center for Health Statistics. In raw numbers, 1,205 women died of maternal causes in the US in 2021.

Conditions such as high blood pressure, obesity, and diabetes may raise a person’s risk of complications, as can being pregnant with multiples, according to the National Institutes of Health. Pregnant women over the age of 35 are at a higher risk of pre-eclampsia.

As labor and delivery units continue to shut their doors, possible solutions to the growing problem are complex, Haeri says.

“I think anyone that comes to you and says the current system is working is lying to you,” he said. “We all know that the current maternity system is not good.”

Kozhimannil’s research has found that many women who live in maternity care deserts are members of minority communities.

“When we conducted that research, we found the communities that were raising the alarm about this … tended to be Black and indigenous, or tribal communities in rural places,” she said. “Black communities in the South and East and tribal communities throughout the country, but especially in the West, Mountain West and Midwest.”

Haeri says one possible solution is at a woman’s fingertips.

“I always say if a woman’s got a cell phone, she should have access,” he said.

A 2021 study found that women who live in remote areas of the US could benefit from telehealth visits, which would decrease the number of “in-person prenatal care visits and increase access to care.”

The American College of Obstetricians and Gynecologists recommends 12 to 14 prenatal care appointments for women with low-risk pregnancies, and the study suggests that expansion of prenatal telehealth appointments could help women living in remote areas better adhere to those guidelines.

Ouma works with mothers who are typically remote and high-risk, Haeri says.

He also believes that promoting midwifery and doula services would help bolster maternity care in the US.

Certified nurse midwives often assist remote mothers who are high-risk or who decide to give birth at home, he says.

Midwives not only deliver babies, they often work with medical equipment and can administer at-home physical exams, prescribe medications, order lab and diagnostic tests, and assess risk management, according to the American College of Nurse Midwives. Doulas – who guide mothers through the birthing process – are often present at home births and even hospital births.

“That midwifery model shines when it comes to maternal care. [And] doula advocacy involvement leads to better outcomes and maternity care, and I think as a system, we haven’t made it easier for those two components to be really an integral part of our maternity care in the US,” Haeri said.

After living in Idaho for 10 years, Wright says, she and her fiancé have considered leaving the state. The lack of maternity and pediatric care at Bonner General Health is a big reason why.

“I feel safe being with [my] doctors. Now, I have to get to know a doctor within a couple of months before my next baby is born,” Wright said.

As she awaits the arrival of her new son, she feels doubtful that there is a solution for mothers like her.

“Everywhere – no matter what – everybody has babies,” she said. “It’s posing a problem for people who have babies who don’t have the income to drive or have high risk pregnancies or first-time mothers who don’t even know what to expect.”

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100,000 newborn babies will have their genomes sequenced in the UK. It could have big implications for child medicine | CNN

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CNN
—

The UK is set to begin sequencing the genomes of 100,000 newborn babies later this year. It will be the largest study of its kind, mapping the babies’ complete set of genetic instructions, with potentially profound implications for child medicine.

The £105 million ($126 million) Newborn Genomes Programme will screen for around 200 rare but treatable genetic conditions, with the aim of curtailing untold pain and anxiety for babies and their families, who sometimes struggle to receive a diagnosis through conventional testing. By accelerating the diagnostic process, earlier treatment of infants could prevent many severe conditions from ever developing.

The study would see roughly one in 12 newborn babies in England screened on a voluntary basis over two years. It will operate as an extension of current newborn testing, with the findings intended to inform policymakers, who could pave the way for sequencing to become more commonplace.

Nevertheless, the project has raised many longstanding ethical questions around genetics, consent, data privacy, and priorities within infant healthcare.

The health game-changers of the last 500 years

In the UK, like many other countries, newborn babies are screened for a number of treatable conditions through a small blood spot sample. Also known as the heel prick test, this method has been routine for over 50 years, and today covers nine conditions including sickle cell disease, cystic fibrosis and inherited metabolic diseases.

“The heel prick is long overdue to be obsolete,” argues Eric Topol, an American cardiologist and professor of molecular medicine at The Scripps Research Institute, who is not connected with the UK sequencing initiative. “It’s very limited and it takes weeks to get the answer. Sometimes, babies that have serious metabolic abnormalities, they’re already being harmed.”

Some conditions that are tested for have variations that may not register a positive result. The consequences can be life-altering.

One example is congenital hyperthyroidism, which impacts neurological development and growth and affects “one in 1,500 to 2,000 babies in the UK,” explains Krishna Chatterjee, professor of endocrinology at the University of Cambridge. It is the result of an absent or under-developed thyroid gland and can be treated with the hormone thyroxine, a cheap and routine medicine. But if treatment doesn’t begin “within the first six months of life, some of those deleterious neurodevelopmental consequences cannot be prevented or reversed.”

The Newborn Genomes Programme will test for one or more forms of congenital hypothyroidism that are not picked up by the heel prick test. “At a stroke, you can make a diagnosis, and that can be game changing – or life changing – for that child,” Chatterjee says.

The program is led by Genomics England, part of the UK Department of Health and Social Care. Along with its partners, it has carried out a variety of preparatory studies, including a large-scale public consultation. A feasibility study is currently underway to assess whether a heel prick, cheek swab or umbilical cord blood will be used for sampling, with the quality of the DNA sample determining the final choice.

Genomics England says that each of the 200 conditions that will be screened for has been selected because there is evidence it is caused by genetic variants; it has a debilitating effect; early or pre-symptomatic treatment has a life-improving impact; and treatment is available for all through the UK’s National Health Service (NHS).

Richard Scott, chief medical officer and deputy CEO at Genomics England, says the program aims to return screening results to families in two weeks, and estimates at least one in 200 babies will receive a diagnosis.

Contracts for sequencing are still to be confirmed, although one contender is American biotech company Illumina. Chief scientist David Bentley says the company has reduced the price of its sequencing 1,000-fold compared to its first genome 15 years ago, and can now sequence the whole human genome for $200.

Bentley argues that early diagnosis via genome sequencing is cost effective in the long term: “People get sick, they get tested using one test after another, and that cost mounts up. (Sequencing) the genome is much cheaper than a diagnostic odyssey.”

Illumina equipment in a sequencing laboratory. The cost of sequencing the human genome has fallen significantly in the last 15 years, says the company.

But while some barriers to genetic screening have fallen, many societal factors are still in play.

Feedback from a public consultation ahead of the UK project’s launch was generally positive, although some participants voiced concerns that religious views could affect uptake, and a few expressed skepticism and mistrust about current scientific developments in healthcare, according to a report on its findings.

Frances Flinter, emeritus professor of clinical genetics and Guy’s and St Thomas’ NHS Foundation Trust and a member of the Nuffield Council on Bioethics, described the program as a “step into the unknown” in a statement to Science Media Centre in December 2022, reacting to the launch of the program.

“We must not race to use this technology before both the science and ethics are ready,” she said at the time. “This research program could provide new and important evidence on both. We just hope the question of whether we should be doing this at all is still open.”

Genome sequencing has raised many philosophical and ethical questions. If you could have aspects of your medical future laid ahead of you, would you want that? What if you were predisposed to an incurable disease? Could that knowledge alone impact your quality of life?

“People don’t generally understand deterministic or fatalistic-type results versus probabilistic, so it does require real teaching of participants,” says Topol. In other words, just because someone has a genetic predisposition to a certain condition, it doesn’t guarantee that they will develop the disease.

Nevertheless, sequencing newborn babies has made some of those questions more acute.

“One of the tenets of genomics and genomics testing is the importance of maintaining people’s autonomy to make their own decisions,” says Scott, highlighting the optional nature of the program.

“We’ve been quite cautious,” he stresses. “All of the conditions that we’re looking for are ones where we think we can make a really substantial impact on those children’s lives.”

Parents-to-be will be invited to participate in the program at their 20-week scan, and confirm their decision after the child’s birth.

“These will be parents, most of whom won’t have any history of a genetic condition, or any reason to worry about one. So it will be an additional challenge for them to appreciate what the value might be for their family,” says Amanda Pichini, clinical lead for genetic counseling at Genomics England.

Part of Pichini’s remit is to ensure equal access to the program and to produce representative data. While diversity comes in many forms, she says – including economic background and rural versus urban location – enlisting ethnically diverse participants is one objective.

“(There) has been a lack of data from other ethnic groups around the world, compared to Caucasians,” says Bentley. “As a result, the diagnostic rates for people from those backgrounds is lower. There are more variants from those backgrounds that we don’t know anything about – we can’t interpret them.”

If genomics is to serve humanity equally, genome data needs to reflect all of it. Data diversity “isn’t an issue that any one country can solve,” says Pichini.

Other countries are also pursuing sequencing programs and reference genomes – a set of genes assembled by scientists to represent a population, for the purpose of comparison. Australia is investing over $500 million AUS (around $333 million) into its genome program; the “All of Us” program is engaged in a five-year mission to sequence 1 million genomes in the US; and in the Middle East, the United Arab Emirates is seeking its own reference genome to investigate genetic diseases disproportionately affecting people in the region, where Illumina’s recently opened Dubai office will add local sequencing capacity.

Richard Scott of Genomics England says he hopes findings from the UK will be useful to other countries’ health systems, especially those not in “a strong position to develop the evidence and to support their decisions as well.”

Sequenced genomes will enter a secure databank using the same model as the National Genomic Research Library, in which they are deidentified and assigned a reference number.

Researchers from the NHS, universities and pharmaceutical companies can apply for access to the National Genomic Research Library (in some cases for a fee), with applications approved by an independent committee that includes participants who have provided samples. There are plenty of restrictions: data cannot be accessed for insurance or marketing purposes, for example.

“We think it’s really important to be transparent about that,” says Pichini. “Often, drugs and diagnostics and therapeutics can’t be developed in the NHS on (its) own. We need to have those partnerships.”

When each child turns 16, they will make their own decision on whether their genomic data should remain in the system. It hasn’t yet been decided if participants can request further investigation of their genome – beyond the scope of newborn screening – at a later date, says Scott.

After the two-year sampling window closes, a cost-benefit analysis of the program will begin, developing evidence for the UK National Screening Committee which advises the government and NHS on screening policies. It’s a process that could take some time.

Chatterjee suggests an entire lifetime might be needed to measure the economic savings that would come from early diagnosis of certain diseases, citing the costs of special needs schooling for children and support for adults living with certain rare genetic conditions: “How does that balance against the technical cost of making a diagnosis and then treatment?”

“I’m quite certain that this cost-benefit equation will balance,” Chatterjee adds.

Multiple interviewees for this article viewed genome sequencing as an extension of current testing, though stopped short of suggesting it could become standard practice for all newborn babies. Even Topol, a staunch advocate for genomics, does not believe it will become universal. “I don’t think you can mandate something like this,” he says. “We’re going to have an anti-genomic community, let’s face it.”

Members of the medical community have expressed a variety of concerns about the program’s approach and scope.

In comments released last December, Angus Clarke, clinical professor at the Institute of Cancer and Genetics at Cardiff University, queried if the program’s whole genome sequencing was driven by a wish to collect more genomic data, rather than improve newborn screening. Louise Fish, chief executive of the Genetic Alliance UK charity, questioned whether following other European nations that are expanding the number of conditions tested through existing bloodspot screening may have “just as great an ability to improve the lives of babies and their families.”

If genome sequencing becomes the norm, it remains to be seen how it will dovetail with precision medicine in the form of gene therapy, including gene editing. While the cost of sequencing a genome has plummeted, some gene therapies can cost millions of dollars per patient.

But for hundreds of babies not yet born in England, diagnosis of rare conditions that have routine treatments will be facilitated by the Newborn Genomes Programme.

“So much of medicine today is given in later life, and saves people for a few months or years,” says Bentley. “It’s so good to see more opportunity here to make a difference through screening and prevention during the early stages of life.

“It is investing maximally in the long-term future as a society, by screening all young people and increasing their chances of survival through genetics so they can realize their enormous potential.”

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Pediatric hospital beds are in high demand for ailing children. Here’s why | CNN

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CNN
—

Effie Schnacky was wheezy and lethargic instead of being her normal, rambunctious self one February afternoon. When her parents checked her blood oxygen level, it was hovering around 80% – dangerously low for the 7-year-old.

Her mother, Jaimie, rushed Effie, who has asthma, to a local emergency room in Hudson, Wisconsin. She was quickly diagnosed with pneumonia. After a couple of hours on oxygen, steroids and nebulizer treatments with little improvement, a physician told Schnacky that her daughter needed to be transferred to a children’s hospital to receive a higher level of care.

What they didn’t expect was that it would take hours to find a bed for her.

Even though the respiratory surge that overwhelmed doctor’s offices and hospitals last fall is over, some parents like Schnacky are still having trouble getting their children beds in a pediatric hospital or a pediatric unit.

The physical and mental burnout that occurred during the height of the Covid-19 pandemic has not gone away for overworked health care workers. Shortages of doctors and technicians are growing, experts say, but especially in skilled nursing. That, plus a shortage of people to train new nurses and the rising costs of hiring are leaving hospitals with unstaffed pediatric beds.

But a host of reasons building since well before the pandemic are also contributing. Children may be the future, but we aren’t investing in their health care in that way. With Medicaid reimbursing doctors at a lower rate for children, hospitals in tough situations sometimes put adults in those pediatric beds for financial reasons. And since 2019, children with mental health crises are increasingly staying in emergency departments for sometimes weeks to months, filling beds that children with other illnesses may need.

“There might or might not be a bed open right when you need one. I so naively just thought there was plenty,” Schnacky told CNN.

The number of pediatric beds decreasing has been an issue for at least a decade, said Dr. Daniel Rauch, chair of the Committee on Hospital Care for the American Academy of Pediatrics.

By 2018, almost a quarter of children in America had to travel farther for pediatric beds as compared to 2009, according to a 2021 paper in the journal Pediatrics by lead author Dr. Anna Cushing, co-authored by Rauch.

“This was predictable,” said Rauch, who has studied the issue for more than 10 years. “This isn’t shocking to people who’ve been looking at the data of the loss in bed capacity.”

The number of children needing care was shrinking before the Covid-19 pandemic – a credit to improvements in pediatric care. There were about 200,000 fewer pediatric discharges in 2019 than there were in 2017, according to data from the US Department of Health and Human Services.

“In pediatrics, we have been improving the ability we have to take care of kids with chronic conditions, like sickle cell and cystic fibrosis, and we’ve also been preventing previously very common problems like pneumonia and meningitis with vaccination programs,” said Dr. Matthew Davis, the pediatrics department chair at Ann & Robert H. Lurie Children’s Hospital of Chicago.

Pediatrics is also seasonal, with a typical drop in patients in the summer and a sharp uptick in the winter during respiratory virus season. When the pandemic hit, schools and day cares closed, which slowed the transmission of Covid and other infectious diseases in children, Davis said. Less demand meant there was less need for beds. Hospitals overwhelmed with Covid cases in adults switched pediatric beds to beds for grownups.

As Covid-19 tore through Southern California, small hospitals in rural towns like Apple Valley were overwhelmed, with coronavirus patients crammed into hallways, makeshift ICU beds and even the pediatric ward.

Only 37% of hospitals in the US now offer pediatric services, down from 42% about a decade ago, according to the American Hospital Association.

While pediatric hospital beds exist at facilities in Baltimore, the only pediatric emergency department in Baltimore County is Greater Baltimore Medical Center in Towson, Maryland, according to Dr. Theresa Nguyen, the center’s chair of pediatrics. All the others in the county, which has almost 850,000 residents, closed in recent years, she said.

The nearby MedStar Franklin Square Medical Center consolidated its pediatric ER with the main ER in 2018, citing a 40% drop in pediatric ER visits in five years, MedStar Health told CNN affiliate WBAL.

In the six months leading up to Franklin Square’s pediatric ER closing, GBMC admitted an average of 889 pediatric emergency department patients each month. By the next year, that monthly average jumped by 21 additional patients.

“Now we’re seeing the majority of any pediatric ED patients that would normally go to one of the surrounding community hospitals,” Nguyen said.

In July, Tufts Medical Center in Boston converted its 41 pediatric beds to treat adult ICU and medical/surgical patients, citing the need to care for critically ill adults, the health system said.

In other cases, it’s the hospitals that have only 10 or so pediatric beds that started asking the tough questions, Davis said.

“Those hospitals have said, ‘You know what? We have an average of one patient a day or two patients a day. This doesn’t make sense anymore. We can’t sustain that nursing staff with specialized pediatric training for that. We’re going to close it down,’” Davis said.

Registered nurses at Tufts Medical Center hold a

Saint Alphonsus Regional Medical Center in Boise closed its pediatric inpatient unit in July because of financial reasons, the center told CNN affiliate KBOI. That closure means patients are now overwhelming nearby St. Luke’s Children’s Hospital, which is the only children’s hospital in the state of Idaho, administrator for St. Luke’s Children’s Katie Schimmelpfennig told CNN. Idaho ranks last for the number of pediatricians per 100,000 children, according to the American Board of Pediatrics in 2023.

The Saint Alphonsus closure came just months before the fall, when RSV, influenza and a cadre of respiratory viruses caused a surge of pediatric patients needing hospital care, with the season starting earlier than normal.

The changing tide of demand engulfed the already dwindling supply of pediatric beds, leaving fewer beds available for children coming in for all the common reasons, like asthma, pneumonia and other ailments. Additional challenges have made it particularly tough to recover.

Another factor chipping away at bed capacity over time: Caring for children pays less than caring for adults. Lower insurance reimbursement rates mean some hospitals can’t afford to keep these beds – especially when care for adults is in demand.

Medicaid, which provides health care coverage to people with limited income, is a big part of the story, according to Joshua Gottlieb, an associate professor at the University of Chicago Harris School of Public Policy.

“Medicaid is an extremely important payer for pediatrics, and it is the least generous payer,” he said. “Medicaid is responsible for insuring a large share of pediatric patients. And then on top of its low payment rates, it is often very cumbersome to deal with.”

Pediatric gastroenterologist Dr. Howard Baron visits with a patient in 2020 in Las Vegas. A large portion of his patients are on Medicaid with reimbursement rates that are far below private insurers.

Medicaid reimburses children’s hospitals an average of 80% of the cost of the care, including supplemental payments, according to the Children’s Hospital Association, a national organization which represents 220 children’s hospitals. The rate is far below what private insurers reimburse.

More than 41 million children are enrolled in Medicaid and the Children’s Health Insurance Program, according to Kaiser Family Foundation data from October. That’s more than half the children in the US, according to Census data.

At Children’s National Hospital in Washington, DC, about 55% of patients use Medicaid, according to Dr. David Wessel, the hospital’s executive vice president.

“Children’s National is higher Medicaid than most other children’s hospitals, but that’s because there’s no safety net hospital other than Children’s National in this town,” said Wessel, who is also the chief medical officer and physician-in-chief.

And it just costs more to care for a child than an adult, Wessel said. Specialty equipment sized for smaller people is often necessary. And a routine test or exam for an adult is approached differently for a child. An adult can lie still for a CT scan or an MRI, but a child may need to be sedated for the same thing. A child life specialist is often there to explain what’s going on and calm the child.

“There’s a whole cadre of services that come into play, most of which are not reimbursed,” he said. “There’s no child life expert that ever sent a bill for seeing a patient.”

Low insurance reimbursement rates also factor into how hospital administrations make financial decisions.

“When insurance pays more, people build more health care facilities, hire more workers and treat more patients,” Gottlieb said.

“Everyone might be squeezed, but it’s not surprising that pediatric hospitals, which face [a] lower, more difficult payment environment in general, are going to find it especially hard.”

Dr. Benson Hsu is a pediatric critical care provider who has served rural South Dakota for more than 10 years. Rural communities face distinct challenges in health care, something he has seen firsthand.

A lot of rural communities don’t have pediatricians, according to the American Board of Pediatrics. It’s family practice doctors who treat children in their own communities, with the goal of keeping them out of the hospital, Hsu said. Getting hospital care often means traveling outside the community.

Hsu’s patients come from parts of Nebraska, Iowa and Minnesota, as well as across South Dakota, he said. It’s a predominantly rural patient base, which also covers those on Native American reservations.

“These kids are traveling 100, 200 miles within their own state to see a subspecialist,” Hsu said, referring to patients coming to hospitals in Sioux Falls. “If we are transferring them out, which we do, they’re looking at travels of 200 to 400 miles to hit Omaha, Minneapolis, Denver.”

Inpatient pediatric beds in rural areas decreased by 26% between 2008 and 2018, while the number of rural pediatric units decreased by 24% during the same time, according to the 2021 paper in Pediatrics.

Steve Inglish, left, and registered nurse Nikole Hoggarth, middle, help a father with his daughter, who fell and required stiches, inside the emergency department at Jamestown Regional Medical Center in rural North Dakota in 2020.

“It’s bad, and it’s getting worse. Those safety net hospitals are the ones that are most at risk for closure,” Rauch said.

In major cities, the idea is that a critically ill child would get the care they need within an hour, something clinicians call the golden hour, said Hsu, who is the critical care section chair at the American Academy of Pediatrics.

“That golden hour doesn’t exist in the rural population,” he said. “It’s the golden five hours because I have to dispatch a plane to land, to drive, to pick up, stabilize, to drive back, to fly back.”

When his patients come from far away, it uproots the whole family, he said. He described families who camp out at a child’s bedside for weeks at a time. Sometimes they are hundreds of miles from home, unlike when a patient is in their own community and parents can take turns at the hospital.

“I have farmers who miss harvest season and that as you can imagine is devastating,” Hsu said. “These aren’t office workers who are taking their computer with them. … These are individuals who have to live and work in their communities.”

Back at GBMC in Maryland, an adolescent patient with depression, suicidal ideation and an eating disorder was in the pediatric emergency department for 79 days, according to Nguyen. For months, no facility had a pediatric psychiatric bed or said it could take someone who needed that level of care, as the patient had a feeding tube.

“My team of physicians, social workers and nurses spend a significant amount of time every day trying to reach out across the state of Maryland, as well as across the country now to find placements for this adolescent,” Nguyen said before the patient was transferred in mid-March. “I need help.”

Nguyen’s patient is just one of the many examples of children and teens with mental health issues who are staying in emergency rooms and sometimes inpatient beds across the country because they need help, but there isn’t immediately a psychiatric bed or a facility that can care for them.

It’s a problem that began before 2020 and grew worse during the pandemic, when the rate of children coming to emergency rooms with mental health issues soared, studies show.

Now, a nationwide shortage of beds exists for children who need mental health help. A 2020 federal survey revealed that the number of residential treatment facilities for children fell 30% from 2012.

“There are children on average waiting for two weeks for placement, sometimes longer,” Nguyen said of the patients at GBMC. The pediatric emergency department there had an average of 42 behavioral health patients each month from July 2021 through December 2022, up 13.5% from the same period in 2017 to 2018, before the pandemic, according to hospital data.

When there are mental health patients staying in the emergency department, that can back up the beds in other parts of the hospital, creating a downstream effect, Hsu said.

“For example, if a child can’t be transferred from a general pediatric bed to a specialized mental health center, this prevents a pediatric ICU patient from transferring to the general bed, which prevents an [emergency department] from admitting a child to the ICU. Health care is often interconnected in this fashion,” Hsu said.

“If we don’t address the surging pediatric mental health crisis, it will directly impact how we can care for other pediatric illnesses in the community.”

Dr. Susan Wu, right, chats with a child who got her first dose of the Pfizer-BioNtech Covid-19 vaccine at Children's Hospital Arcadia Speciality Care Center in Arcadia, California, in 2022.

So, what can be done to improve access to pediatric care? Much like the reasons behind the difficulties parents and caregivers are experiencing, the solutions are complex:

A lot of it comes down to money

Funding for children’s hospitals is already tight, Rauch said, and more money is needed not only to make up for low insurance reimbursement rates but to competitively hire and train new staff and to keep hospitals running.

“People are going to have to decide it’s worth investing in kids,” Rauch said. “We’re going to have to pay so that hospitals don’t lose money on it and we’re going to have to pay to have staff.”

Virtual visits, used in the right situations, could ease some of the problems straining the pediatric system, Rauch said. Extending the reach of providers would prevent transferring a child outside of their community when there isn’t the provider with the right expertise locally.

Increased access to children’s mental health services

With the ongoing mental health crisis, there’s more work to be done upstream, said Amy Wimpey Knight, the president of CHA.

“How do we work with our school partners in the community to make sure that we’re not creating this crisis and that we’re heading it off up there?” she said.

There’s also a greater need for services within children’s hospitals, which are seeing an increase in children being admitted with behavioral health needs.

“If you take a look at the reasons why kids are hospitalized, meaning infections, diabetes, seizures and mental health concerns, over the last decade or so, only one of those categories has been increasing – and that is mental health,” Davis said. “At the same time, we haven’t seen an increase in the number of mental health hospital resources dedicated to children and adolescents in a way that meets the increasing need.”

Most experts CNN spoke to agreed: Seek care for your child early.

“Whoever is in your community is doing everything possible to get the care that your child needs,” Hsu said. “Reach out to us. We will figure out a way around the constraints around the system. Our number one concern is taking care of your kids, and we will do everything possible.”

Nguyen from GBMC and Schimmelpfennig from St. Luke’s agreed with contacting your primary care doctor and trying to keep your child out of the emergency room.

“Anything they can do to stay out of the hospital or the emergency room is both financially better for them and better for their family,” Schimmelpfennig said.

Knowing which emergency room or urgent care center is staffed by pediatricians is also imperative, Rauch said. Most children visit a non-pediatric ER due to availability.

“A parent with a child should know where they’re going to take their kid in an emergency. That’s not something you decide when your child has the emergency,” he said.

Jaimie and Effie Schnacky now have an asthma action plan after the 7-year-old's hospitalization in February.

After Effie’s first ambulance ride and hospitalization last month, the Schnacky family received an asthma action plan from the pulmonologist in the ER.

It breaks down the symptoms into green, yellow and red zones with ways Effie can describe how she’s feeling and the next steps for adults. The family added more supplies to their toolkit, like a daily steroid inhaler and a rescue inhaler.

“We have everything an ER can give her, besides for an oxygen tank, at home,” Schnacky said. “The hope is that we are preventing even needing medical care.”

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What is the painful condition called shingles? | CNN

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CNN
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Sen. Dianne Feinstein, the 89-year-old California Democrat, recently announced she is out of the hospital and recovering at home from shingles, a painful viral inflammation in the skin’s nerves that causes a blistering rash lasting for two to four weeks. Feinstein was diagnosed in February and hospitalized in San Francisco last week.

Shingles, also called herpes zoster, is caused by the varicella-zoster virus — which is the same virus responsible for chickenpox. Varicella zoster is also responsible for a rare condition called Ramsay Hunt syndrome that caused pop star Justin Bieber’s face to become partially paralyzed in June 2022.

“As you can see, this eye is not blinking. I can’t smile on this side of my face. This nostril will not move,” Bieber said at the time in answer to fans who wondered why he had canceled performances.

Painful skin is one of first signs of shingles, and for some people, the pain is intense. It can create a burning sensation, or the skin can tingle or be sensitive to touch, according to the Mayo Clinic. Shingles can occur at other places on the body, such as the face and scalp, but the most common presentation is on the torso on one side of the body.

A red rash will begin to develop at the site of the pain within a few days. The rash often begins as a small, painful patch, which then spreads like “a stripe of blisters that wraps around either the left or right side of the torso,” the Mayo Clinic said.

In rare cases, the rash may become more widespread and look similar to a chickenpox rash, typically in people with weakened immune systems, according to the US Centers of Disease Control and Prevention.

In addition to pain, some people may develop chills, fatigue, fever, headache, upset stomach and sensitivity to light. See a doctor if you are over 50, have a weakened immune system, the rash is widespread and painful, or the pain and rash occur near an eye.

“If left untreated, this infection may lead to permanent eye damage,” according to the Mayo Clinic.

The varicella-zoster virus is highly contagious when in the blister stage, spreading through direct contact with the fluid from blisters and via viral particles in the air.

However, you cannot get shingles from someone who has shingles. If you aren’t vaccinated for chickenpox or haven’t previously had it and are infected by that person, you will develop chickenpox, which then puts you at risk for shingles later in life, the CDC said.

If you have shingles, you can prevent the spread of the virus by covering the rash and not touching or scratching the raised vesicles that form the rash, the CDC stated. Wash your hands often.

“People with shingles cannot spread the virus before their rash blisters appear or after the rash crusts,” the CDC said.

If the rash is covered, the risk of transmission “is low,” the CDC said. “People with chickenpox are more likely to spread (the virus) than people with shingles.”

If you think you have shingles, call a doctor as soon as you can, the CDC recommended. If caught early, there are antiviral medications, including acyclovir, valacyclovir and famciclovir, that can shorten the length and severity of the illness.

“These medicines are most effective if you start taking them as soon as possible after the rash appears,” the CDC said.

Doctors may also suggest over-the-counter or prescription pain medication for the burning and pain, while calamine lotion, wet compresses and oatmeal baths may ease itching.

For older adults, the population most likely to develop shingles, the best treatment is prevention. The US Food and Drug Administration approved a two-dose vaccine called Shingrix in 2017 for people 50 and older.

“Shingrix is also recommended for adults 19 years and older who have weakened immune systems because of disease or therapy,” the CDC said.

Shingrix, which is not based on a live virus, is more than 90% effective in encouraging the aging immune system to recognize and be ready to fight the virus, according to its manufacturer, GlaxoSmithKline.

Anyone who has had a severe allergic reaction to a dose of Shingrix or is allergic to any of the components of the vaccine should avoid it, the CDC said.

“People who currently have shingles, and women who are pregnant or breastfeeding, should wait to get Shingrix,” the CDC said.

Another vaccine called Zostavax, which the FDA approved for people over 50 in 2006, is 51% effective in preventing shingles, according to the CDC. Zostavax is based on a live virus, the same approach used for the chickenpox vaccine recommended in childhood. It has not been sold in the United States since November 2020.

If you have never had chickenpox, you can’t get shingles. However, once you’ve had chickenpox, the virus remains inactive in the spine’s sensory neurons, possibly erupting years later as shingles.

Two doses of a chickenpox vaccine for children, teens and adults, introduced in 1995, is 100% effective at preventing a severe case of chickenpox, according to the CDC. Immunity lasts 10 to 20 years, the CDC noted.

In the small number of people who still get chickenpox after vaccination, the illness is typically milder, with few or no blisters.

The CDC recommends the vaccine be given to children in two doses, the first between 12 and 15 months and a second one between 4 and 6 years. Anyone 13 years old and older who has no evidence of immunity can get two doses four to eight weeks apart, the CDC said.

Some people should not get the vaccine, including pregnant women, people with certain blood disorders or those on prolonged immunosuppressive therapy, and those with a moderate or severe illness, among others.

About 1 in 10 people will develop a painful and possibly debilitating condition called postherpetic neuralgia, or long-term nerve pain. All other signs of the rash can be gone, but the area is extremely painful to touch. Less often, itching or numbness can occur.

The condition rarely affects people under 40, the CDC said. Older adults are most likely to have more severe pain that lasts longer than a younger person with shingles. For some, the nerve pain can be devastating.

“Five years later, I still take prescription medication for pain,” said a 63-year-old harpist who shared his story on the CDC website. “My shingles rash quickly developed into open, oozing sores that in only a few days required me to be hospitalized.

“I could not eat, sleep, or perform even the most minor tasks. It was totally debilitating. The pain still limits my activity levels to this day,” said the musician, who has been unable to continue playing the harp due to pain.

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Canadian siblings born four months early set record as the world’s most premature twins | CNN

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CNN
—

For expectant parents Shakina Rajendram and Kevin Nadarajah, the doctor’s words were both definitive and devastating: Their twins were not “viable.”

“Even in that moment, as I was hearing those words come out of the doctor’s mouth, I could still feel the babies very much alive within me. And so for me, I just wasn’t able to comprehend how babies who felt very much alive within me could not be viable,” Rajendram recalled.

Still, she knew that there was no way she would be able to carry to term. She had begun bleeding, and the doctor said she would give birth soon. The parents-to-be were told that they would be able to hold their babies but that they would not be resuscitated, as they were too premature.

Rajendram, 35, and Nadarajah, 37, had married and settled in Ajax, Ontario, about 35 miles east of Toronto, to start a family. They had conceived once before, but the pregnancy was ectopic – outside the uterus – and ended after a few months.

As crushing as the doctor’s news was, Nadarajah said, they both refused to believe their babies would not make it. And so they scoured the Internet, finding information that both alarmed and encouraged them. The babies were at just 21 weeks and five days gestation; to have a chance, they would need to stay in the womb a day and a half longer, and Rajendram would have to go to a specialized hospital that could treat “micropreemies.”

The earlier a baby is born, the higher the risk of death or serious disability, the US Centers for Disease Control and Prevention says. Babies born preterm, before 37 weeks gestation, can have breathing issues, digestive problems and brain bleeds. Development challenges and delays can also last a lifetime.

The problems can be especially severe for micropreemies, those born before 26 weeks gestation who weigh less than 26 ounces.

Research has found that infants born at 22 weeks who get active medical treatment have survival rates of 25% to 50%, according to a 2019 study.

Adrial was born weighing less than 15 ounces.

Rajendram and Nadarajah requested a transfer to Mount Sinai Hospital in Toronto, one of a limited number of medical centers in North America that provides resuscitation and active care at 22 weeks gestation.

Then, they say, they “prayed hard,” with Rajendram determined to keep the babies inside her just a few hours longer.

Just one hour after midnight on March 4, 2022, at 22 weeks gestation, Adiah Laelynn Nadarajah was born weighing under 12 ounces. Her brother, Adrial Luka Nadarajah, joined her 23 minutes later, weighing not quite 15 ounces.

According to Guinness World Records, the pair are both the most premature and lightest twins ever born. The previous record holders for premature twins were the Ewoldt twins, born in Iowa at the gestational age of 22 weeks, 1 day.

It is a record these parents say they want broken as soon as possible so more babies are given the opportunity to survive.

“They were perfect in every sense to us,” Rajendram said. “They were born smaller than the palm of our hands. People still don’t believe us when we tell them.”

The babies were born at just the right time to be eligible to receive proactive care, resuscitation, nutrition and vital organ support, according to Mount Sinai Hospital. Even an hour earlier, the care team may not have been able to intervene medically.

“We just didn’t really understand why that strict cut off at 22, but we know that the hospital had their reasons. They were in uncharted territory, and I know that they had to possibly create some parameters around what they could do,” Rajendram said.

“They’re definitely miracles,” Nadarajah said as he described seeing the twins in the neonatal intensive care unit for the first time and trying to come to terms with what they would go through in their fight to survive.

“I had challenging feelings, conflicting feelings, seeing how tiny they were on one hand, feeling the joy of seeing two babies on the second hand. I was thinking, ‘how much pain they are in?’ It was so conflicting. They were so tiny,” he said.

These risks and setbacks are common in the lives of micropreemies.

Dr. Prakesh Shah, the pediatrician-in-chief at Mount Sinai Hospital, said he was straightforward with the couple about the challenges ahead for their twins.

He warned of a struggle just to keep Adiah and Adrial breathing, let alone feed them.

The babies weighed little more than a can of soda, with their organs visible through translucent skin. The needle used to give them nutrition was less than 2 millimeters in diameter, about the size of a thin knitting needle.

“At some stage, many of us would have felt that, ‘is this the right thing to do for these babies?’ These babies were in significant pain, distress, and their skin was peeling off. Even removing surgical tape would mean that their skin would peel off,” Shah told CNN.

But what their parents saw gave them hope.

“We could see through their skin. We could see their hearts beating,” Rajendram said.

They had to weigh all the risks of going forward and agreeing to more and more medical intervention. There could be months or even years of painful, difficult treatment ahead, along with the long-term risks of things like muscle development problems, cerebral palsy, language delays, cognitive delays, blindness and deafness.

Rajendram and Nadarajah did not dare hope for another miracle, but they say they knew their babies were fighters, and they resolved to give them a chance at life.

“The strength that Kevin and I had as parents, we had to believe that our babies had that same strength, that they have that same resilience. And so yes, they would have to go through pain, and they’re going to continue going through difficult moments, even through their adult life, not only as premature babies. But we believed that they would have a stronger resolve, a resilience that would enable them to get through those painful moments in the NICU,” Rajendram said.

There were painful setbacks over nearly half a year of treatment in the hospital, especially in the first few weeks.

“There were several instances in the early days where we were asked about withdrawing care, that’s just a fact, and so those were the moments where we just rallied in prayer, and we saw a turnaround,” Nadarajah said.

Adiah spent 161 days in the hospital and went home on August 11, six days before her brother, Adrial, joined her there.

Adrial’s road has been a bit more difficult. He has been hospitalized three more times with various infections, sometimes spending weeks in the hospital.

Both siblings continue with specialist checkups and various types of therapy several times a month.

But the new parents are finally more at ease, celebrating their babies’ homecoming and learning all they can about their personalities.

The twins are now meeting many of the milestones of babies for their “corrected age,” where they would be if they were born at full-term.

“The one thing that really surprised me, when both of them were ready to go home, both of them went home without oxygen, no feeding tube, nothing, they just went home. They were feeding on their own and maintaining their oxygen,” Shah said.

Adiah is now very social and has long conversations with everyone she meets. Their parents describe Adrial as wise for his years, curious and intelligent, with a love of music.

“We feel it’s very important to highlight that contrary to what was expected of them, our babies are happy, healthy, active babies who are breathing and feeding on their own, rolling over, babbling all the time, growing well, playing, and enjoying life as babies,” Rajendram said.

These parents hope their story will inspire other families and health professionals to reassess the issue of viability before 22 weeks gestation, even when confronted with sobering survival rates and risks of long-term disability.

“Even five years ago, we would not have gone for it, if it was not for the better help we can now provide,” Shah said, adding that medical teams are using life-sustaining technology in a better way than in previous years. “It’s allowing us to sustain these babies, helping keep oxygen in their bodies, the role of carbon dioxide, without causing lung injury.”

Adiah and Adrial’s parents say they’re not expecting perfect children with perfect health but are striving to provide the best possible life for them.

“This journey has empowered us to advocate for the lives of other preterm infants like Adiah and Adrial, who would not be alive today if the boundaries of viability had not been challenged by their health care team,” Rajendram said.

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Up to 20,000 people who attended a religious gathering may have been exposed to measles. What should they do next? | CNN

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CNN
—

Up to 20,000 people who attended a religious gathering at a college in Wilmore, Kentucky, in February could have been exposed to a person later diagnosed with measles.

On Friday, the US Centers for Disease Control and Prevention issued an alert to clinicians and public health officials about the confirmed case of measles in an individual present at the gathering who had not been vaccinated against the disease.

“If you attended the Asbury University gathering on February 17 or 18 and you are unvaccinated or not fully vaccinated against measles, you should quarantine for 21 days after your last exposure and monitor yourself for symptoms of measles so that you do not spread measles to others,” according to the CDC advisory.

The CDC also recommended that people who are unvaccinated receive the measles, mumps, and rubella (MMR) vaccine.

Reading this news, people may have questions about measles, including its symptoms, infection outcomes and who is most at risk. They may also want to know what makes measles so contagious, what has been the cause of recent outbreaks and how effective the MMR vaccine is.

To help answer these questions, I spoke with CNN Medical Analyst Dr. Leana Wen, an emergency physician and professor of health policy and management at the George Washington University Milken Institute School of Public Health. Previously, she served as Baltimore’s health commissioner, where her duties included overseeing the city’s immunization and infectious disease investigations.

CNN: What is measles, and what are the symptoms?

Dr. Leana Wen: Measles is an extremely contagious illness that’s caused by the measles virus. Despite many public health advances, including the development of the MMR vaccine, it remains a major cause of death among children globally.

The measles virus is transmitted via droplets from the nose, mouth or throat of infected individuals. If someone is infected and coughs or sneezes, droplets can land on you and infect you. These droplets can land on surfaces, and if you touch the surface and then touch your nose or mouth, that could infect you, too.

Symptoms usually appear 10 to 12 days after infection. They include a high fever, runny nose, conjunctivitis (pink eye) and small, painless white spots on the inside of the mouth. A few days after these symptoms begin, many individuals develop a characteristic rash — flat red spots that generally start on the face and then spread downward over the neck, trunk, arms, legs and feet. The spots can become joined together as they spread and can be accompanied by a high fever.

A nurse gives a woman a measles, mumps and rubella virus vaccin at the Utah County Health Department on April 29, 2019 in Provo, Utah.

CNN: What are outcomes of measles infections? Who is most at risk?

Wen: Many individuals recover without incident. Others, however, can develop severe complications.

One in five unvaccinated people with measles are hospitalized, according to the CDC. As many as 1 out of every 20 children with measles will get pneumonia; about 1 in 1,000 who get measles can develop encephalitis, a swelling of the brain that can lead to seizures and leave the child with lasting disabilities. And nearly 1 to 3 out of every 1,000 children who are infected with measles will die.

Measles is not only a concern for children. It can also cause premature births in pregnant women who contract it. Immunocompromised people, such as cancer patients and those infected with HIV, are also at increased risk.

CNN: What makes measles so contagious?

Wen: Measles is one of the most contagious diseases in the world — up to 90% of the unvaccinated people who come into contact with a contagious individual will also become infected. The measles virus can remain in the air for up to two hours after an infected person leaves an area.

Another reason why measles spreads so easily is its long incubation period. In infected people, the time from exposure to fever is an average of about 10 days, and from exposure to rash onset is about 14 days — but could be up to 21 days. In addition, infected people are contagious from four days before rash starts through four days after. That’s a long period of time where they could unknowingly infect others.

CNN: What has been the cause of recent measles outbreaks?

Wen: It’s important to note that this incident in Kentucky is not yet considered an outbreak. Only one person has been diagnosed with measles. That person was possibly exposed to many others given the number of people in attendance at this gathering, but we don’t know yet if any of those people were infected.

But let’s look at a recent example of a confirmed outbreak in the US: In November 2022, health officials in central Ohio raised alarm over young children being diagnosed with measles. In all, 85 children got sick. None of the children died, but 36 needed to be hospitalized. All those infected were either unvaccinated or not yet fully vaccinated.

Health officials were able to contain the outbreak through contact tracing, vaccination and other public health measures in early February, and it was declared over. But there is concern it won’t be the last of its kind. A study from the CDC reported the rate of immunizations for required vaccines among kindergarten students nationwide dropped from 95% in the 2019-20 school year to 93% in the 2021-22 school year. Some communities have far lower rates than this national average, however, which can lead to outbreaks — not only of measles but also diseases like polio that can also have severe consequences.

CNN: How effective is the MMR vaccine?

Wen: The MMR vaccine is a two-dose vaccine. The recommendation is for children to receive the first dose at age 12-15 months and the second dose at age 4-6 years. One dose of the MMR vaccine 93% effective at preventing measles infection. Two doses are 97% effective.

CNN: What is the best way to protect against measles?

Wen: The MMR vaccine is an extremely safe and very effective vaccine and is recognized as a significant public health advance for preventing an otherwise extremely contagious disease from spreading and causing potentially very severe — even fatal — outcomes.

Consider that the vaccine was licensed in the US in 1963. In the four years before that, there were an average of more than 500,000 cases of measles every year and over 430 measles-associated deaths. By 1998, there were just 89 cases and no measles-associated deaths. That’s a huge public health triumph.

Young children should receive the vaccine according to the recommended schedule. Older kids and adults who never received it should also discuss getting it with their health care provider. And clinicians and public health officials in the US and around the world should redouble efforts to increase routine childhood immunizations so as to stop preventable diseases from making a comeback.

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A shortage of albuterol is about to get worse, especially in hospitals | CNN

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CNN
—

An ongoing shortage of a medicine commonly used to treat people with breathing problems is expected to get worse after a major supplier to US hospitals shut down last week.

Liquid albuterol has been in short supply since last summer, according to the American Society of Health-System Pharmacists. It has been on the US Food and Drug Administration’s shortages list since October. The news of the plant shutdown worries some doctors who work with patients with breathing problems such as asthma.

“This is definitely concerning, especially as we are coming out of the respiratory season where we had a big demand with RSV, Covid-19 and flu, and are now heading into spring allergy season when a lot of kids and adults experience asthma symptoms,” said Dr. Juanita Mora, a national volunteer medical spokesperson for the American Lung Association and an allergist/immunologist based in Chicago. “This is a life-saving drug and being able to breathe is vital for everyone.”

The manufacturer that recently shut down, Akorn Operating Company LLC, had filed for Chapter 11 bankruptcy in May 2020.

It was the only company to make certain albuterol products used for continuous nebulizer treatment. It’s a staple in children’s hospitals, but had been out of stock since last fall. Without that particular form of the product, hospitals have had to scramble to find alternatives.

“Members are either forced to compound it themselves to make the product or go to an outside third party source who is compounding the product,” said Paula Gurz, senior director of pharmacy contracting with Premier Inc., a major group purchasing company for hospitals.

With the Akorn shutdown, Gurz said products from the one remaining major domestic source of liquid albuterol, Nephron Pharmacuticals, have been on back order. Nephron just started shipping albuterol last Friday, Gurz said, but to get back on track, “it’s going to be an uphill climb.”

Hospitals around the country said they’re watching the supply chain – and their current stock – closely. There’s concern they might have to delay discharging patients because they don’t have enough medicine, or that they may see more ER visits for people with breathing problems who don’t have access to medicine.

Dr. Eryn Piper, a clinical pharmacist at Children’s Hospital of New Orleans, said her hospital has been largely unaffected so far, but for months she has heard about retail pharmacies and other health systems that have had issues with albuterol shortages.

“The big problem we’ve been hearing about is inhalation solutions, not really the inhalers, it’s more like the solutions that go into the nebulizer machines for inhalation that the patients breath in,” said Piper.

Without the larger Akorn product, staff at Lurie Children’s Hospital in Chicago had to squeeze out the albuterol contents from smaller packages.

It’s “time-consuming and labor-intensive as it takes opening 40 containers to equal 20 mL (each patient on continuous albuterol requires 3-5 syringes per day),” said hospital spokesperson Julianne Bardele in an email.

When Nephron was unable to meet demand due to manufacturing issues, Bardele said Lurie had to make another temporary switch to a different concentration and use an alternative liquid bronchodilator, levalbuterol.

Most hospital pharmacies are aware of supply issues for many medicines, particularly pediatric medicines, said T.J. Grimm, the director of retail and ambulatory services at University Hospitals Cleveland Medical Center, and they try to keep a higher stock – especially of the less expensive medicines like albuterol.

“Just so we can cover situations like this,” Grimm said.

Grimm said his system has albuterol supply for a couple of months still, but he’s frustrated and concerned about the supply chain.

“When you have supply chains that are just-in-time, it can create some issues with when something goes off,” Grimm added. “There’s the short-term crisis we all have to get through and then there’s a longer term. We need to think about these things a little more strategically, especially with our kids.”

Jerrod Milton, the chief clinical officer at Children’s Hospital Colorado, said they’ve been paying close attention to the albuterol shortages for many months. The hospital has experienced shortages in the past, and has continued to implement protocols to conserve doses.

“Challenges are what we deal with when it comes to pediatric medicine. We consider most of the kids that we take care of as somewhat therapeutic orphans,” Milton said. “It’s just another one of the myriad of shortages that we have to deal with, I guess.”

Jessica Daley, the group vice president of strategic sourcing for Premier, said that she doesn’t anticipate that the albuterol shortage will be an ongoing problem for years, but when the market has only a handful of suppliers, “it makes for a very tight market, a very concerning market right now.”

Daley said there are things hospitals can do to help, such as protocol changes, making products on site and finding different suppliers.

The Children’s Hospital Association stepped in to help when it heard from members having difficulty finding enough supply. The association worked with STAQ Pharma, a facility that provides compounded pediatric medication, to start production on batches of albuterol for children’s hospitals in the sizes they needed.

“We’ve been creative and trying to work proactively. So when we think there’s going to be a problem, we’re trying to plan ahead,” said Terri Lyle Wilson, director of supply chain services for the Children’s Hospital Association.

STAQ should be at full production by May, so hospitals will have a steady, stable supply ahead of the next season in which respiratory viruses are in wide circulation, the association says.

Daley at Premier said that in an ideal world, there would be more suppliers of these products, particularly with generic drugs, so that when there is a problem with one, the market could handle it. When there is a concentration of manufacturing with a small number of suppliers, it is very hard to recover, she said.

“We really advocate for diversity and supply to prevent types these types of issues,” Daley said. “Meaning at least three globally, geographically diverse suppliers that are supplying the market with sufficient products.”

For patients, Piper at Children’s Hospital of New Orleans said they are encouraging patients with breathing problems to take precautions and avoid asthma triggers if possible. She said if a patient’s usual pharmacy runs out, it’s also good to check with a doctor to see if there is another medication that’s available.

Inhalers don’t seem to be impacted by the shortage so far, but Daley said if people panic about the lack of albuterol for hospitals, that could change.

“Albuterol is one of those things that if there’s a patient who needs it, you want to have it all the time. So there’s always that potential for the market to respond and react in a way that that will then create downstream shortages of other sizes or presentations of a product,” Daley said.

To avoid that problem, Milton at Children’s Hospital Colorado said it’s simple: “Talk to a provider and see if there are alternatives,” Milton said. “And please don’t hoard.”

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3 messages from Daniel Tiger that teens still need | CNN

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CNN
—

While I was playing with my toddler at the park in 2012, another mom told me about a new show that “you have to see”: “Daniel Tiger’s Neighborhood.” Soon, I was hearing the show’s coping strategy jingles everywhere. How many of us used the song, “When you have to go potty, stop and go right away” to toilet train our kids?

Much of the animated series’ appeal comes from its fidelity to Fred Rogers, who died 20 years ago this week. Rogers’ show “Mister Rogers’ Neighborhood,” which ran from 1968 to 2001 on PBS, was a transformative force in children’s media — largely because of the way it focused on children’s emotional development.

While they may no longer have use for Daniel Tiger’s “potty song,” older kids face other challenges. And though the first children who watched the show on PBS are now tweens and teens, the show’s lesson can still help them in the midst of our current mental health crisis.

I recently spoke to show creator Angela Santomero, who said she took Rogers’ beloved wisdom to heart as she “set out to create ‘Daniel Tiger’s Neighborhood’ for preschoolers — and for the teens that our first viewers have grown up to be.”

Here are three messages from Daniel Tiger and Rogers that not-so-little kids still need to hear.

Teens need the reminder that simply naming emotions is a powerful mental health strategy. According to research from neuroscientist Lisa Feldman Barrett, people who could “distinguish finely among their unpleasant feelings — those ’50 shades of feeling crappy’ — were 30 percent more flexible when regulating their emotions, less likely to drink excessively when stressed, and less likely to retaliate aggressively against someone who has hurt them.”

“Helping kids of any age to label and express their emotions is one of the key lessons from Fred Rogers,” Santomero said. That’s why so many “Daniel Tiger’s Neighborhood” episodes pair a single emotion with a strategy song – like anger (“When you feel so mad that you want to roar, take a deep breath and count to four.”) or sadness (“It’s OK to feel sad sometimes. Little by little you’ll feel better again.”).

Finding the right word to express how you are feeling inside isn’t always easy. I spent several years as a middle and high school teacher, and I remember chatting with a teen who said she was “so angry” with her best friend, but she didn’t know why.

Soon we began to talk about the college process, and she revealed that her friend had outscored her on the SAT. What she was really feeling, she realized, was jealousy, self-doubt and worry about the future. Once she could name that, her anger “evaporated.” When you can identify what you are feeling and why, it’s easier to figure out what to do next.

“If kids as young as preschoolers can start learning these strategies, our hope is that once they become teens they will have some tools to deal with hard situations that are mentally challenging,” Santomero said.

Remember all the newness and change your preschoolers faced — and how much they needed your comforting presence? Now think about tweens and teens: Their bodies are changing, their brains go through a second growth spurt, they face social and academic pressures, they are increasingly aware of societal problems, and they are doing the hard work of figuring out their identities and planning for the future.

If there’s one essential message from Rogers that I carry with me both as a parent and educator, it’s this: Don’t worry alone. As he said, “Anything that’s human is mentionable, and anything that is mentionable can be more manageable. When we can talk about our feelings, they become less overwhelming, less upsetting and less scary.”

Adolescent psychologist Lisa Damour says that for teens, strong emotions are “a feature not a bug.” In her new book “The Emotional Lives of Teenagers: Raising Connected, Capable, and Compassionate Adolescents,” she writes, “It’s beyond our power to prevent or quickly banish our teens’ psychological pain, nor should that be our goal. We can and should, however, help our teenagers develop ways to regulate their emotions that offer relief and do no harm.” And this starts with listening.

One of my favorite aspects of Daniel Tiger is the way the adults in his life pause to really listen to his concerns. In the show’s very first episode, Daniel’s mom helps him work through his worries about going to the doctor with the song, “When we do something new, let’s talk about what we’ll do.”

Really listening to preschoolers or teens is a skill, said Santomero. It takes practice to “lean in, focus, ask relevant questions, and listen with your whole heart.” This kind of attentive listening “shows how empathetic you are to their situation, how much you care about them, and how important they are to you. And that goes a long way in supporting their mental health.”

One strategy from “Daniel Tiger’s Neighborhood” that can help parents of teens is “thoughtful pausing,” said Santomero, who is also a co-creator of “Blues Clues.”

Pausing during a conversation or vent session can give teens “time to get their thoughts together and reflect,” Santomero said. “It helps to make sure that it’s a two-way dialogue.” These pauses also open up space for teens to find their own solutions.

When I watched that first season of “Daniel Tiger’s Neighborhood” with my child, I found myself tearing up more than once because the familiar songs and messages brought back how Rogers made me feel as a young child: special.

We don’t need research to tell us how important unconditional love is for teens — but that data exists, regardless. In a 2014 study in the journal Child Development, researchers found that “parental warmth” amplifies every other effective parenting strategy, from setting boundaries to helping teens “tackle the academic and psychological challenges of secondary school.”

How did researchers measure parental warmth? With survey questions as simple as, “How often do you let your child know you really care about him/her?”

That warmth was a gift Rogers offered children every day when he signed off his show with, “You’ve made this day a special day, by just your being you. There’s no person in the whole world like you, and I like you just the way you are.” Teens need that message — even (maybe especially) when they are pulling away or pushing all our buttons.

One of Santomero’s “all-time favorite Mister Rogers’ moments” is a message he recorded for adults in 2002, shortly before he died. It’s a message that is just as applicable 20 years later as we support the next generation:

“I know how tough it is sometimes to look with hope and confidence on the months and years ahead,” he said. “But I would like to tell you what I often told you when you were much younger: I like you just the way you are. And, what’s more, I’m so grateful to you for helping the children in your life to know that you’ll do everything you can to keep them safe, and to help them express their feelings in ways that will bring healing in many different neighborhoods.”

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