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Cardiovascular Medicine, Pediatrics, Pregnancy, Surgery

Baby with rare heart defect saved by innovative surgery

Baby with rare heart defect saved by innovative surgery

jackson-lane-stanford-childrens560

Elyse Lane was 20-weeks pregnant when she learned that her unborn son had a rare and severe heart defect. Her baby was missing his pulmonary valve and his pulmonary artery was 10 times the normal size.

The outlook was bleak. The baby’s enlarged artery hampered his blood and oxygen flow, a condition called tetralogy of Fallot, and his missing pulmonary valve made the defect worse.

Fortunately, Lane and her husband, Andy Lane, a former Major League Baseball coach with the Chicago Cubs, were referred to Frank Hanley, MD, a cardiothoracic surgeon at Stanford Children’s Health. Hanley had experience with this kind of heart defect and knew how to perform the delicate surgery needed to repair their baby’s heart.

The Lanes recount the story of their son’s lifesaving surgery on the Lucile Packard Children’s Hospital blog:

When he was just five days old, Jackson underwent a 13-hour operation that would save his life. Hanley and his team did a complex overhaul of Jackson’s heart: they inserted a pulmonary valve, reduced the size of Jackson’s right pulmonary artery, and enlarged his small, disconnected, left pulmonary artery. Hanley also used an innovative and intricate procedure known as the LeCompte maneuver, which altered the pathway of Jackson’s right and left pulmonary arteries from the back of the heart and aorta to the front. This gave his severely compromised bronchial tubes room to grow and remodel after surgery was over.

As the story explains, Jackson’s heart will need some maintenance in the future, but he should live a normal and long life.

“He can now do anything he wants in life,” said Elyse Lane in in the blog piece. “He’s already made it through the biggest challenge.”

Previously: Patient is “living to live instead of living to survive,” thanks to heart repair surgery, A very special small package: Three-pound baby receives pacemaker, Advancing heart surgery for the most fragile babies, and Little hearts, big tools
Photo courtesy of Lucile Packard Children’s Hospital

Immunology, In the News, Nutrition, Pediatrics, Research

Peanut products and babies: Now okay?

Peanut products and babies: Now okay?

peanut butter2 - big

Updated 2-25-15: Allergy expert Sharon Chinthrajah, MD, discussed the study and its implications on KQED’s Forum today:

***

2-24-15: Any parent of young children is likely familiar with the warnings: It’s not okay to give your baby peanut butter, or any other peanut product, before he or she turns one. Don’t do it! These instructions are so imprinted on my brain that I practically did a double-take when I came across headlines about new research suggesting that infants should, indeed, be fed peanut products – in order to prevent the development of peanut allergies.

This isn’t the first time that the benefits of giving allergenic foods to babies have been outlined, but the language surrounding this study has been particularly strong. As the writer of a New York Times blog entry explained, the authors of the study and accompanying editorial “called the results ‘so compelling’ and the rise of peanut allergies ‘so alarming’ that guidelines for how to feed infants at risk of peanut allergies should be revised soon.” He went on to outline the study findings:

In the study, conducted in London, infants 4 to 11 months old who were deemed at high risk of developing a peanut allergy were randomly assigned either to be regularly fed food that contained peanuts or to be denied such food. These feeding patterns continued until the children were 5 years old. Those who consumed the foods that had peanuts in them were far less likely to be allergic to peanuts when they turned 5.

After hearing the news, I reached out to the folks at the Sean N. Parker Center for Allergy Research at Stanford to get their take on the findings. Sharon Chinthrajah, MD, a clinical assistant professor of medicine, explained that this work is the first randomized controlled study to look at how to prevent peanut allergies. She told me:

We’ve all been waiting for the results of this landmark study to confirm the shift in the paradigm of when to introduce foods into the diet. Early introduction of peanut in the right infants can prevent peanut allergy. Dr. [Gideon Lack, the leader of the study] and colleagues were able to show an 80 percent reduction in peanut allergy in children who started eating peanut early and incorporated it into their regular diet.

Chinthrajah believes the guidelines on babies and peanut products should be revised, “because peanut allergies affect 2 percent of our population in the U.S. and most people do not outgrow this allergy.” But, as other experts have done, she cautions that not everyone should introduce peanuts and other foods into their diet early. “Those who are ‘high-risk’ – who have other allergic conditions such as eczema or other food allergies – should consult with their allergist to see if it would be safe to introduce peanut into their child’s diet,” she advised.

Previously: Taking a bite out of food allergies: Stanford doctors exploring new way to help sufferers, Simultaneous treatment for several food allergies passes safety hurdle, Stanford team shows, Researchers show how DNA-based test could keep peanut allergy at bay, A mom’s perspective on a food allergy trial and Searching for a cure for pediatric food allergies
Photo by Anna

Mental Health, Parenting, Pediatrics, Pregnancy, Women's Health

“2020 Mom Project” promotes awareness of perinatal mood disorders

"2020 Mom Project" promotes awareness of perinatal mood disorders

3505373098_0c1961a29a_zHaving a baby is a huge life alteration – who wouldn’t be at least a bit anxious? The vast majority of women experience mood shifts surrounding pregnancy: Around 80 percent experience “baby blues,” and in up to 20 percent this develops into something more serious. But most of these women go untreated, and many undiagnosed.

The California Maternal Mental Health Collaborative (which is changing its name to “The 2020 Mom Project” as they expand outside California) is spearheading efforts to get the word out about perinatal mood disorders. Last Friday, they hosted a seminar on emerging considerations in maternal mental health. As a birth doula, I was particularly happy to listen in. The keynote speakers approached the issue from a pointedly broad perspective, considering the social, economic, and cultural factors that influence health problems and care provision. The take-home message was that to address perinatal mood disorders, we need to address the context in which they happen, including protecting tomorrow’s moms while they are children today.

Vincent Felitti, MD, professor of medicine at UC San Diego and founder of the California Institutes of Preventive Medicine, has done extensive research on how “adverse childhood experiences” affect health by correlating an “ACE score” of self-reported negative experiences such as abuse, neglect, or household dysfunction with incidence of disease. The top-10 causes of death in the U.S. are strongly correlated with high ACE scores. Moreover, so are their risk factors! Much abuse of alcohol, drugs, and food is a coping mechanism for prior traumas. “What we see as the problem turns out to be somebody’s solution to problems we know nothing about,” Feletti said. “Depression is considered a disease, but what if it was a normal response to adverse life experiences? ACE score statistics support this.”

In a similar vein, Calvin Hobel, MD, an obstetrician-gynecologist at Cedars Sinai Medical Center in Los Angeles, spoke about how maternal stress surrounding pregnancy causes complications and adverse child outcomes, including premature birth. Stress causes uterine irritability, which causes cervical changes that favor pre-term delivery. It signals to the placenta that things aren’t going well, and the baby better get out early. Just as soldiers with stressful backgrounds are more at risk for PTSD, moms who’ve had a rough life are more stress-reactive and less prepared to cope with the demands of motherhood.

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Chronic Disease, Health Policy, In the News, Pediatrics, Public Health, Sleep

Talking about teens’ “great sleep recession”

Talking about teens' "great sleep recession"

Sleepy Teen Student

We all understand, at some level, that sleep is critical to our health. But there’s a cultural undercurrent that belies that understanding: We tend to glorify the go-getters who can survive on four or five hours of sleep, lauding their productivity and drive. Numerous studies have shown that Americans of all ages – kids, teens, and adults – are not getting enough sleep.

More and more, researchers are warning that lack of sleep can damage our long-term health. Just yesterday, Rafael Pelayo, MD, with the Stanford Center for Sleep Sciences and Medicine, was on KQED’s Forum radio program to discuss a new study looking at some alarming trends in teen sleep habits. The study, titled “The Great Sleep Recession” was published this week in the scientific journal Pediatrics. It showed that over the past 20 years, teens have been getting less sleep. Girls, minority teens, teens in urban areas and of low socioeconomic status were less likely to get at least seven hours of sleep than male, white teens. What’s more, minority teens and low SES teens were likely to report they thought they got enough sleep.

During the show, Pelayo spoke about our relationship with sleep and the challenges of sticking to a “sleep budget”:

When I read the title [of the study] it made me think of Bill Dement, who talks – at Stanford – about a sleep debt and not having enough total sleep. And a sleep debt has been growing and accumulating in people who have used sleep as something as optional in their lives. These students are… modeling after their parents, who are not getting enough sleep… But in the kids, it’s a particularly hard problem for them, they feel pressure to not get enough sleep.

Pelayo went on to say that parents and teens tend to prioritize other things, like homework, over sleep – but what they should be doing is setting aside a certain amount of time for sleep. “If the homework doesn’t get done, it doesn’t get done. They can’t make homework more important than sleep,” he said.

That last statement is a pretty radical suggestion, but if we are to avoid the fall-out from our bad sleep habits, radical changes may be the only solution.

Previously: With school bells ringing, parents should ensure their children are doing enough sleeping, Stanford docs discuss all things sleep, Study shows poor sleep habits as a teenager can “stack the deck against you for obesity later in life” and What are the consequences of sleep deprivation?
Photo by Alberto Vacarro

otolaryngology, Patient Care, Pediatrics, Stanford News

Hearing clearly helped Down syndrome toddler develop on track

Hearing clearly helped Down syndrome toddler develop on track

joshua-copen-mom-stanford-childrens

For children who are deaf or have hearing disabilities, cochlear implants can make it possible to hear sounds. Unlike hearing aids, which simply amplify sounds, cochlear implants stimulate the auditory nerve directly. If young children get the implant and the intense follow-up therapy, they are able to “develop language skills at a rate comparable to children with normal hearing, and many succeed in mainstream classrooms,” according to the National Institutes of Health.

But for children with other developmental disabilities, that training and therapy follow-up can be even more challenging, so many doctors don’t advocate for implants for them. That was the experience of Joshua Copen, who has Down syndrome, and his mother, Iara Peng. Notably, children with Down syndrome are more likely than the rest of the population to have hearing problems.

Peng’s efforts to get Joshua a cochlear implant ran into frustrating roadblocks until she met Kay Chang, MD, a pediatric otolaryngologist and otologic surgeon at Lucile Packard Children’s Hospital Stanford. Chang described the challenges of cochlear implants for children like Joshua in a post on Packard’s Healthier, Happier Lives Blog:

“Traditionally, developmentally delayed patients haven’t been seen as ideal candidates for cochlear implants,” said Chang, associate professor of otolaryngology – Head and Neck Surgery at the Stanford University School of Medicine. “The electrical stimuli delivered by the implants have no resemblance to regular hearing. The brain has to adapt itself to learn the electrical patterns. Someone who is developmentally delayed isn’t going to progress as fast as a child who is developing normally. However, just because it’s a lot tougher to rehabilitate a child with developmental delay doesn’t mean they won’t benefit from it.”

For Joshua, an added stumbling block was getting his family’s insurance providers to cover the surgery and follow-up classes. But that issue was resolved, and now, at five years old, Joshua has had no problems with his learning comprehension.

Evidence is mounting that although more challenging to implement, cochlear implants for children like Joshua are worth the effort. John Oghalai, MD, head of the Children’s Hearing Center at Packard, is conducting a study looking into how cochlear implants help developmentally delayed children. The blog post also highlights a 2012 study by Oghalai:

Oghalai found that the use of cochlear implants in deaf children with developmental delay can help them from falling further behind their peers and shouldn’t be so easily dismissed. And the earlier the child gets the implants – 12 months is the minimum age allowed by the FDA – the better.

Previously: Cochlear implants could help developmentally delayed infants, says Stanford/Packard study and Baby steps: Therapy that helps the deaf to hear

Clinical Trials, Nutrition, Pediatrics, Research, Stanford News

Batman has his utility belt – and I have my EpiPen

Batman has his utility belt - and I have my EpiPen

Batman“Matt, do you have your EpiPen?” Those six words have echoed throughout my house each morning ever since I could understand them.

“Matt, do you have your EpiPen?” “Matt, do you have your EpiPen?” “Matt, do you have your EpiPen?” How many times have I heard that? Thousands. Growing up with a food allergy was a huge burden requiring constant vigilance. Vigilance about carrying my EpiPen and about knowing where to sit at the school lunch table, who would chaperone the field trip, whose birthday party my mom or dad would have to hang out at, whose house was safe for me to hang out at – and vigilance about which foods I eat.

Since enrolling and subsequently graduating from a Stanford food allergy study led by Kari Nadeau, MD, PhD, my anxiety surrounding my allergy has greatly decreased, but my vigilance remains steadfast. The Stanford study has given me safety from cross contamination and a life without fear.

Yet, just as Batman has his utility belt, I have my EpiPen. The EpiPen may as well be tattooed on to my skin, as it still travels with me everywhere I go. In my opinion, this should be the same for every severely allergic person. My good friend (who has multiple food allergies) doesn’t carry one when he’s with me. His rationale behind it is, “I’m with you, so I don’t need one.” I recently met someone who doesn’t carry an EpiPen although she has a diagnosed anaphylactic allergy to tree nuts and peanuts. Her rationale? “I’ve never had a reaction, and I am really careful about what I eat.”

I can’t understand when I meet people with food allergies and they don’t carry an EpiPen. Sometimes they say, ” I just get hives around my mouth.” Or “I just get a little itchy on my tongue.” Or “I have one – it’s in my car.” CAN YOU BE SERIOUS?

Unfortunately for me, before entering the allergy study, I had to use my trusted EpiPen several times. It was very tense, scary and thankfully quick. After a person gets over the paralyzing fear of the needle (which is actually hidden inside the pen), the EpiPen is actually easy to use (once you get the hang of it). It works so fast. It actually stops the allergic reaction in its tracks. It’s the only life-saving medication food that allergic people can use to help prevent life threatening reactions.

So yes, under the advice of my doctor, I still carry an EpiPen. Even though I successfully eat a lot (4,000 milligrams each) of all of my allergens daily, (which are wheat, rye, barley and oats), it’s always by my side – at camp, tennis, school or a party. I know the facts of how quickly a reaction can escalate, and I may still have a reaction. I am after all, a living science experiment.

The words, “Matt, do you have your EpiPen?” are still essential to my life.

Matthew Friend is a high-school junior from Chicago. A version of this piece originally appeared in the Huffington Post.

Previously: Participant in Stanford food-allergy study delves into lifestyle-changing research, Taking a bite out of food allergies: Stanford doctors exploring new way to help sufferersSimultaneous treatment for several food allergies passes safety hurdle, Stanford team shows, Researchers show how DNA-based test could keep peanut allergy at bay and A mom’s perspective on a food allergy trial and Searching for a cure for pediatric food allergies
Photo by JD Hancock

Big data, Events, Pediatrics, Pregnancy, Research, Stanford News

Stanford hosts inaugural Childx conference this spring

Stanford hosts inaugural Childx conference this spring

Chandler's 15 Month CheckupRegistration is now open for the first ever Childx conference, a TED-style conference focused on inspiring innovation in pediatric and maternal health. The conference will bring thought leaders from several disciplines to the Stanford campus April 2 and 3 for two days of conversation about how to harness many branches of medicine to solve the health problems of pregnancy, infancy and childhood.

“Pediatric medicine faces unique challenges,” said systems biology researcher Dennis Wall, PhD, who leads the conference’s scientific advisory board. “Most children are quite healthy, which can make it difficult to attract adequate research attention to severe pediatric diseases that affect relatively few children. At the same time, every child’s health status is influenced by a complex array of factors, which cause decades-long ripple effects as today’s children mature into tomorrow’s adults.”

The conference, developed and sponsored by Stanford’s Child Health Research Institute, has five themes:

  • Definitive stem cell and gene therapy for child health
  • The arc of fetal, developmental/cognitive, and adult health
  • Accelerating child and maternal health innovation
  • Precision medicine for rare and historically untreatable childhood disease
  • The health ecosystem and the impact of social, economic, political, environmental, and cultural issues on children’s health and well-being

Featured guests include Martin Andrews, who leads Glaxo Smith Kline‘s rare diseases team; Nadia Rosenthal, PhD, founding director of the Australian Regenerative Medicine Institute; Harvard’s Matthew Gillman, MD, an expert on early-life prevention of chronic disease; Sheena Josselyn, PhD, a neuroscientist at the University of Toronto and the Hospital for Sick Children who studies molecular processes behind learning and memory; and Donald Schwarz, MD, the director of the Robert Wood Johnson Foundation, as well as a large cast of Stanford stars from several areas of pediatric medicine.

“Pediatric medicine needs to turn its focus more to creating advanced, technology-enabled solutions that will increase our ability to detect, monitor and treat child health,” Wall said. “No pediatric conference to-date has combined these key themes of precision healthcare with the most pressing challenges and opportunities in child and maternal health. The inaugural Childx will be the first conference to do so.”

The conference will welcome maternal and child health researchers, clinicians, investors, industry experts and interested community members. Early bird registration is open through February 28.

Immunology, In the News, Medicine and Society, Pediatrics, Public Health, Stanford News

A discussion of vaccines, “the single most life-saving innovation ever in the history of medicine”

A discussion of vaccines, "the single most life-saving innovation ever in the history of medicine”

vaccine and syringeIn a recent, in-depth interview with KCBS Radio, now available online, Stanford immunologist Mark Davis, PhD, called vaccines “the single most life-saving medical innovation ever in the history of medicine” and called not vaccinating children a real danger.

Davis was interviewed on air for 30 minutes following the announcement that he’ll direct a new, $50-million initiative at Stanford, funded by the Bill & Melinda Gates Foundation, which aims to speed discovery of vaccines for some of the world’s deadliest infectious diseases, such as malaria, tuberculosis and HIV.

Davis, who directs the Stanford Institute for Immunity, Transplantation and Infection, harked back to the time when cemeteries were filled with the graves of young children who fell victim to diseases such as measles and mumps that were virtually wiped out with the advent of vaccines. In the pre-vaccine era, about half of all children died of infectious diseases that are readily preventable today, he noted.

“One day I wandered through Union Cemetery in Redwood City, which started around 1850,” he said. “What was telling about the earlier graves is how many graves you have where they are two large headstones for the mother and father and a lot of little headstones for the children who died in infancy from measles and mumps and all these diseases that had also vanished with childhood vaccination but that are now coming back because people say, ‘I’ve heard something bad about these vaccines. So we are not going to give them to our kid.’”

Parents who chose not to vaccinate their children “are putting your kid at risk and also putting other young children at risk, as children don’t get vaccinated for measles until they are one year old. So kids die. Older people – a population we study here at Stanford – don’t respond very well. Their immune system often deteriorates with age… So even if they had a measles shot in their youth, they might still be vulnerable. So if you don’t vaccinate your child, you are putting your kid at risk, anyone with an immune deficiency at risk, little babies at risk, old people at risk. It just shouldn’t be permitted.”

Measles, he noted, is a “very ambitious” virus that spreads through the air, surviving on droplets of water vapor, so coughing can readily spread the disease. As a matter of public health, the disease can be controlled through the principle of “herd immunity” – the idea that if most people are vaccinated, a disease will be less likely to move through the population, he said.

“So it’s not just about you and your child. It’s about society… If more and more people are not vaccinated, it gives a virus, like the measles virus, an opportunity to run through the population very quickly, which it does, and endanger many more people,” he told listeners.

As to whether California should require parents to vaccinate their children, Davis was adamant on the subject:

I wouldn’t want unvaccinated kids in a classroom with my kids. I think it’s a danger. These are decisions made by parents that could affect the health of their children for the rest of their lives… The government is totally correct to say you should not kill your child, you should not starve your child, you should not beat your child, and you should not deprive your child of vaccines.

Previously: With a Gates Foundation grant, Stanford launches major effort to expedite vaccine discovery, Infectious disease expert discusses concerns about undervaccination and California’s measles outbreak and Side effects of childhood vaccines are extremely rare, new study finds
Photo by NIH

Global Health, Media, Patient Care, Pediatrics, Research, Technology, Videos

OPENPediatrics offers opportunity to help physicians, and sick children, worldwide

OPENPediatrics offers opportunity to help physicians, and sick children, worldwide

6948764580_97d353e8d4_zAs chief of critical care at Boston Children’s Hospital, Jeffrey Burns, MD, MPH, was asked to consult on the case of a young girl who fell ill while vacationing with her family in Guatemala. He had treated a similar case in the U.S. before, but he encountered unexpected technological hurdles.

That spurred Burns — working with many partners, including IBM — to create OPENPediatrics.org, a platform that allows physicians to share skills and resources to treat sick children. Burns described his hopes for the site in a 2014 article in Medtech Boston:

Our goal was to create something called a community of practice where instead of being broad and thin like a MOOC (Massive Open Online Classes), we would be narrow and much more deep, and the content would actually be peer reviewed by doctors and nurses who care for critically ill children, because those are essentially our primary users,” Burns says.

The site, which launched last year, offers forums for health-care workers worldwide to share experiences and a multimedia library with videos and animations — including some interactive features — on everything from nasopharyngeal suctioning to Faciltating Parent Presence During Invasive Procedures.

Burns and his team have been thinking how to leverage the platform to support research.

(A confession: I learned about OPENPediatrics through an article in Wesleyan magazine. Stanford’s Cardinal brethren on the East Coast, Wes, like Stanford fosters interdisciplinary projects and, I’m proud to say, is the alma mater of two of us in the medical school’s relatively small Office of Communication.)

Previously: Stanford undergrad works to redistribute unused medications and reduce health-care costs, Stanford Medicine X: From an “annual meeting to a global movement”  and Euan Ashley discusses harnessing big data to drive innovation for a healthier world
Photo by Intel Free Press

Addiction, Health Policy, Parenting, Pediatrics, Podcasts, Public Health

Discussing the American Academy of Pediatrics’ call to put the brakes on marijuana legalization

Discussing the American Academy of Pediatrics' call to put the brakes on marijuana legalization

A wave of changes in state laws on the use of marijuana for medicinal and recreational purposes has stirred the American Academy of Pediatrics. It’s taken 10 years for the AAP to update its policy on the legalization of marijuana, and they released its new one on Monday.

74381759_e5a563cf3d_zThe organization still opposes legalization but it has opened the door to reform in several ways. First, recognizing that minority kids bear the brunt of criminal penalties for pot use, they call for decriminalization. Second, they call for the U.S. Drug Enforcement Agency to reclassify marijuana from a Schedule 1 listing for controlled substances to a Schedule 2. This action would effectively allow more research to be conducted and in turn scientifically determine where marijuana is most effective as a treatment. A review by the federal government is currently underway.

I asked Stanford pediatrician Seth Ammerman, MD, the lead author of the statement, what the AAP was trying to achieve with its policy redo and why such a restrictive stance on legalization since the train for legalization – recreational and medicinal –  seems to have already left the “coffee house.”

In this 1:2:1 podcast, Ammerman cites major two concerns. First, if legalized and commercialized, marijuana will become a big business, and the same marketing efforts by tobacco companies that encouraged teens to take up cigarettes will lasso them to pot smoking. “Well, aren’t kids smoking pot already?” I asked. Ammerman fully realizes that any teen who wants pot can readily buy it – legalization, to the AAP, is an imprimatur. Secondly, Ammerman cited, as does the new policy statement, the compelling and growing scientific evidence that the brain in formation continues to gel through the teen years and into the 20s. Marijuana, just like alcohol and any other drug, is likely to play a lot of bad tricks as the prefrontal cortex solidifies.

As described in the policy paper:

New research has also demonstrated that the adolescent brain, particularly the prefrontal cortex areas controlling judgment and decision-making, is not fully developed until the mid-20s, raising questions about how any substance use may affect the developing brain. Research has shown that the younger an adolescent begins using drugs, including marijuana, the more likely it is that drug dependence or addiction will develop in adulthood.

Ammerman says that the AAP will follow closely what happens in states where marijuana has been legalized both for health and recreation, and it will look carefully at what future evidence suggests. Clearly, there’s still a lot of smoke around this issue.

Previously: To protect teens’ health, marijuana should not be legalized, says American Academy of Pediatrics
Photo by Paul-Henri S

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