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Ethics, In the News, Parenting, Patient Care, Pediatrics, Stanford News

Parents now help doctors decide what care is right for the sickest babies

Parents now help doctors decide what care is right for the sickest babies

Today, NPR’s Morning Edition featured an in-depth story on the evolution of decision-making in neonatal intensive care units – hospital nurseries for the sickest infants. Parents now have much more say in their babies’ care than in the past, and Stanford experts who were on the front lines of the change, including William Benitz, MD, chief of neonatology at Lucile Packard Children’s Hospital Stanford, explained how it happened.

As medical care for premature and other at-risk babies advanced in the 1970s and early 1980s, doctors gained the ability to save many infants who would once have died soon after birth. But some children in the new category of survivors had lifelong disabilities, with lasting implications for them and their families.

At first, doctors did not realize that this change would affect parents’ desire to participate in planning medical decisions for fragile infants:

“It never occurred to anyone that that might be a reasonable conversation to have,” Benitz says. “We were in unexplored territory.”

As technology improved and doctors tried to save sicker babies, and some born even earlier in gestation, there were new decisions to make: Should the health team put the tiny child on a ventilator? Attempt heart surgery? Those interventions helped many infants survive. Others did not fare as well.

“A lot of them ended up with significant impairments,” Benitz recalls. And doctors started to get pushback. “In the mid-80s we began to hear from families that maybe that wasn’t consistent with their goals for their children.”

As a result, neonatologists began having in-depth conversations with parents about the possible outcomes of different treatments for their infants. The practice is now widespread, and it means a lot to parents like Karin and Chris Belluomini, whose daughter, Joy, was born in May 2015 with Down syndrome, several heart defects and fluid around her lungs.

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Cancer, Pediatrics, Research, Stanford News

A family’s story changes the science of a rare tumor

A family's story changes the science of a rare tumor

Super-DylanWhen Danah Jewett’s 5-year-old son, Dylan, was dying from a brain tumor in 2008, she wanted to know if there was anything her family could do to help other children who might someday face the same terrible diagnosis. Yes, said Dylan’s doctor, Michelle Monje, MD, PhD: Would you be willing to donate his tumor for cancer research after his death?

Danah and Dylan’s dad, John, didn’t hesitate. If it will help, they said, we’ll do it.

Monje explained that scientists needed a way to study Dylan’s rare tumor, diffuse intrinsic pontine glioma, in the lab. The tumor grows tangled into a part of the brain stem that is risky to biopsy in living patients, and decades of chemotherapy trials had not budged the disease’s five-year fatality rate of 99 percent. But having DIPG tumor cells in a dish would open a new world of research options for understanding the biology of the tumor and – Monje hoped – developing new treatments.

After Dylan’s death in early 2009, Monje’s team succeeded in transforming his tumor cells into the world’s first DIPG tissue culture. A few months later, I wrote a feature story for Stanford Medicine magazine about the Jewetts’ donation and its impact. In the intervening years, as I’ve continued to report on Monje’s DIPG research, she has also kept me abreast of the effect of Dylan’s story. It’s pretty remarkable: So far, 21 other families have donated DIPG tissue from their deceased children, many after reading the Stanford Medicine story. And DIPG families have also raised more than $1 million to help fund Monje’s work. Their generosity is enabling new understanding of how the tumor functions, and has helped Monje’s team identify an existing drug that slows DIPG in mice.

I recently interviewed Danah for a short follow-up piece for Stanford Medicine about the impact of Dylan’s story. I asked her to reflect on why she felt able to share the story, given that many families wouldn’t want to open a window for the world into such a heartbreaking part of their lives.

“It’s a hard one,” Danah told me. “I do know a lot of families stay private, but it didn’t dawn on me at the time. I knew then that I just didn’t want to let his memory die. By sharing the story, it helped Dylan to be living on – in my heart and other people’s.”

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Behavioral Science, Mental Health, Pediatrics, Stanford News

Beyond behavior: Stanford expert on recognizing and helping traumatized kids

Beyond behavior: Stanford expert on recognizing and helping traumatized kids

beyond_behavior_fullWhen Victor Carrion, MD, was a pediatric psychiatry fellow in the mid-1990s, he had an “a-ha” moment about some of his poorly behaved patients that set the trajectory of his career. These kids had been traumatized, and the adults around them didn’t recognize it.

He described what happened for my feature story in Stanford Medicine magazine:

“Kids were coming to see me with little notes from their teachers that said, ‘This child has ADHD. Please place on Ritalin,’” Carrion says. Chuckling slightly, he recalls his half-facetious reaction to these missives: “Wow: A diagnosis has been made; there’s a treatment plan; there’s not much for me to do here.”

But after carefully obtaining life histories for several patients, he realized that although some had ADHD, many others had been traumatized by such experiences as abuse, neglect or witnessing violence in their homes or communities. Their reactions — a triad of self-protective behaviors that experts summarize as “freeze, fight or flee” — were being misinterpreted as ADHD’s signature inattentiveness, hyperactivity, aggression and poor cooperation.

Childhood trauma, Carrion realized, was very poorly understood. People assumed kids were more resilient in the face of trauma than adults (they’re not), that you could deal with trauma by ignoring it (no) or that children traumatized before they had the vocabulary to describe what was going on would simply forget what had happened (no again). He wanted to understand what was really going on.

Now, 20 years later, his work and that of many other trauma experts across the country clearly shows we can’t afford to ignore the long shadow cast by early-life abuse, neglect, violence and other instability. “We need to address trauma because it impacts health, period,” Carrion told me. “Not just mental health; it impacts physical health as well.”

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Nutrition, Parenting, Pediatrics

Forget perfection and just cook for your kids, says new book by Stanford author

Forget perfection and just cook for your kids, says new book by Stanford author

Maya Adam at farmers market“Our children are in trouble because we’ve outsourced the job of feeding them,” says Stanford child nutrition expert Maya Adam, MD.

To tackle the problem, Adam is spreading a refreshing message: Forget celebrity-chef culture and food fads, and just cook for your kids. Eat real food and enjoy it. Don’t worry about perfection. Help your children learn to love healthy foods that will love them back.

Over the last few years, as the instructor of a wildly popular online nutrition and cooking course and through the nonprofit she founded, Adam has shared her common-sense approach with thousands of people. Now she has a book, Food Love Family: A Practical Guide to Child Nutrition, which builds on those messages with stories about how parents around the world find a healthy approach to feeding their kids.

“My goal was to translate scientific research on nutrition and children’s health, and make it something parents could turn into practical success,” Adam told me when I called to chat about her new book. An edited version of our conversation is below.

Your book suggests we focus more on whole foods and less on individual nutrients. Why is that important for parents to hear?

Traditionally, nutrition science is reductionist – it has focused on individual nutrients because that’s how scientists study them. But it doesn’t necessarily translate to action for parents, because we eat food, not nutrients. The book is about making that link, translating science into helpful strategies parents could implement with their families.

In childhood, we have this unique opportunity to create a situation where the foods kids enjoy most are the foods that will support them throughout their lives. If we can do that, then we’ve won: We never have to re-train them later when they’re pre-diabetic or struggling with their weight and say, “You’re no longer allowed to eat the foods you’ve grown to love.” Instead, their whole lives they love the right things.

You’ve written about the fact that our culture has built cooking up into an extreme sport, not to be attempted by amateurs — and that scares people off. If you heard from a parent who said, “OK, you’ve convinced me to overcome my fear of cooking, but I need an easy place to start,” what would you tell them?

At the end of the book, we’ve included very simple recipes, all of which tie back to our free online course with videos that show the recipes in action. It’s part of a system of support for parents. If they’re visual learners and want to see someone doing it – how to crack an egg while holding a young child on your hip, for instance – we have that.

Cooking for your family is not about being perfect; it’s about being real, about doing just a little more than you’re doing now. We all have to do the best we can with the resources that are available. Maybe we can’t always afford the grass-fed beef, for instance, but that’s OK. We do what we can with the time, skills and financial resources we have.

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Cardiovascular Medicine, Patient Care, Surgery

61-year-old grandfather gets new heart valve at Lucile Packard Children’s Hospital Stanford

61-year-old grandfather gets new heart valve at Lucile Packard Children's Hospital Stanford

Dr. George Lui, M.D., Dr. Dan Murphy, M.D., Mr. Sang Hee Yoon, Mrs. Min Wha Yoon, and Dr. Katsuhide Maeda, M.D. at Stanford Children’s Health Care on Tuesday, October 6, 2015. ( Norbert von der Groeben/ Stanford School of Medicine )One little-known fact about children’s hospitals: A number of their patients are not children.

I wrote about one such patient recently, a 61-year-old San Jose grandfather who received a new heart valve at Lucile Packard Children’s Hospital Stanford in May. Sang Hee Yoon was born in South Korea at a time when many babies with heart defects died in infancy. He was one of the first people there to receive a surgical repair for his heart condition, called tetraology of Fallot. The repair worked well for many years, but eventually he needed a replacement for a malfunctioning heart valve.

When the time came, the doctors on our adult congenital heart disease team were here to help. My story explains the unusual challenges of their field, which is growing rapidly as 20,000 teenagers with congenital heart defects “graduate” to adult medical care each year:

“Patients come back at 40 or 50 years old, telling us, ‘My doctor said I was cured,’” said George Lui, MD, medical director of the Adult Congenital Heart Program at Stanford, a collaboration between the Heart Center at Lucile Packard Children’s Hospital and Stanford Health Care. Some patients’ childhood surgical repairs were initially judged so successful that they never expected to return to a cardiologist, said Lui… In other cases, the first surgery was so unusual and risky that the surgeon discouraged the patient from undergoing further operations.

But most adults with repaired congenital heart defects are not cured, doctors have learned. As the discipline has matured, cardiologists have honed their understanding of how to help patients like Yoon navigate the risks of living with lingering heart problems, as well as learning how congenital defects interact with cardiovascular problems people acquire with age.

Mr. Yoon’s new heart valve has made a big difference – he and his wife told me that his health is better than ever before. Prior to his surgery at Stanford, his malfunctioning heart valve meant that his body never quite got enough oxygen. He often felt achy or had tightness in his chest, especially at high altitudes. All that is resolved now. The couple’s four children and 10 grandchildren are thrilled:

“They are so happy about my condition,” [Yoon] said. “Not only family members but everybody I know is saying, ‘You look so healthy!’” The Yoons have already visited Kings Canyon National Park, a destination they chose for its mountainous scenery. “I feel such gratitude that now I can enjoy my new life,” Yoon said.

Previously: Patient is “living to live instead of living to survive” thanks to heart repair surgery, Little hearts, big tools and Surgeon building a heart valve that can grow and repair itself
Photo – of Mr. and Mrs. Yoon with his doctors (from left to right) George Lui, MD, Daniel Murphy, MD, and Katsuhide Maeda, MD – courtesy of Lucile Packard Children’s Hospital Stanford

Obesity, Pregnancy, Research, Stanford News, Women's Health

Maternal obesity increases risk for stillbirth, new Stanford study finds

Maternal obesity increases risk for stillbirth, new Stanford study finds

bassinetWomen who are obese when they become pregnant are more likely than other expectant mothers to have a stillborn baby. But most studies of this relationship have included too few people to give detailed information about which obese women are at greatest risk, or which stages of pregnancy are most likely to be affected.

New Stanford research, led by Suzan Carmichael, PhD, and published online this week in PLOS ONE, changes that. The study used a very large California database of vital records on live births and stillbirths, allowing Carmichael’s team to compare 4,000 stillbirths – in which the baby was born dead after at least 20 weeks of pregnancy – to a control group of 1.1 million live births that followed full-term pregnancies.

With the large data set, the researchers were able to examine the effect of mothers’ race and ethnicity, whether the mothers had previously given birth, and how far along the pregnancies were at the time of the stillbirths. They excluded from analysis the cases in which an obvious fetal factor (such as a chromosomal abnormality) or a known maternal disease (such as diabetes) was probably responsible for the stillbirth.

What emerged is a complicated picture. Overall, greater obesity was linked with greater risk of stillbirth, with a 10-unit increase in body mass index equivalent to a 1.5- to twofold increase in stillbirth risk, a finding echoed by other recent research.

But the increase in risk wasn’t equal across all groups of women, or all stages of pregnancy. For instance, among Hispanic women who had never had a child before, the most extreme level of obesity conferred a five- to sixfold increase in the risk of having a stillbirth between 20 and 23 weeks of pregnancy and about a twofold increase in the risk of stillbirth near the baby’s due date, but was not linked with any change in the risk of having a stillbirth between 24 and 36 weeks’ gestation.

A few themes did emerge, however. Obesity consistently increased the risk for the very earliest stillbirths (between 20 and 23 weeks), regardless of a mother’s ethnicity or whether she had had other children. This is similar to another recent Stanford finding that obesity increases the risk for the earliest premature live births.

In the paper’s discussion section, the authors write:

Obesity and stillbirth are both complex, and many potential factors may contribute to their association. Stillbirth may stem from a variety of adverse conditions, including placental insufficiency, preterm onset of labor or rupture of membranes, infection and cord abnormalities. Obesity could contribute to any of these problems. In addition, obesity may contribute to lower sensitivity with regard to detection of fetal complications, on the part of monitoring tools or maternal ability to detect changes in fetal movement.

The authors hope their findings will help shed light on what causes stillbirth and how, perhaps, some cases might be prevented.

The research was funded by the March of Dimes Prematurity Research Center at Stanford University and the Stanford Child Health Research Institute.

Previously: Women who have had a stillbirth are more likely to experience long-term depression, study shows, Losing Jules: Breaking the silence around stillbirth and A call to “break the silence” of stillbirth
Photo by sincerely, brenda sue

Cardiovascular Medicine, Pediatrics, Pregnancy, Research

Higher blood sugar in pregnancy tied to heart defects in baby, even if mom isn’t diabetic

Higher blood sugar in pregnancy tied to heart defects in baby, even if mom isn't diabetic

five-heartsFor many years, doctors have known that women who had diabetes during pregnancy faced an increased risk of giving birth to a baby with a congenital heart defect. But now, for the first time, researchers have shown that the risk isn’t limited to women with diabetes. A new Stanford study, publishing today in JAMA Pediatrics, found that women who were carrying a fetus with tetralogy of Fallot, the most common cause of blue baby syndrome, had higher blood sugar levels on average than women carrying healthy fetuses, even if the mothers were not diabetic.

From our press release about the research:

“Diabetes is the tail end of a spectrum of metabolic abnormalities,” said James Priest, MD, the study’s lead author and a postdoctoral scholar in pediatric cardiology. “We already knew that women with diabetes are at significantly increased risk for having children with congenital heart disease. What we now know, thanks to this new research, is that women who have elevated glucose values during pregnancy that don’t meet our diagnostic criteria for diabetes also face an increased risk.”

The Children’s Heart Center at Lucile Packard Children’s Hospital Stanford (where Priest, who is also a pediatric cardiology fellow, sees patients) is already a world leader in treating children born with tetralogy of Fallot. Pediatric cardiothoracic surgeon Frank Hanley, MD, has developed a surgical technique called unifocalization that allows him to repair the defect in a single, long operation – which is safer than the alternative of putting babies and children through several open-heart surgeries. Many families come long distances so their children can receive the lifesaving surgery.

Although the Heart Center team is glad to be able to offer state-of-the-art treatment for kids who already have heart defects, they would be even happier to know how to prevent such defects from happening in the first place. Genetics plays into some heart defects, but in most cases, the cause is a mystery.

So this new study, though relatively small with 277 subjects, gives a clue that the Stanford team is eager to follow with other investigations:

“I’m excited by this research because it opens up a lot of questions about how physiologic processes in the mother may be related to congenital heart disease,” Priest said. “Most of the time we don’t have any idea what causes a baby’s heart defect. I aim to change that.”

The study’s senior author, Gary Shaw, DrPH, professor of pediatrics in neonatal and developmental medicine, added, “There are several other kinds of structural birth defects, in addition to heart defects, that have been linked with overt diabetes. This new work will motivate us to ask if underlying associations with moderately increased glucose levels may be similarly implicated in risks of some of these other birth defects.”

I also chatted with pediatric cardiologist and Heart Center director Stephen Roth, MD, who pointed out a practical advantage of the new finding that hadn’t occurred to me: We already know how to address elevated blood sugar with strategies such as dietary change, exercise and medications. If today’s discovery is replicated in larger studies, it wouldn’t be hard to translate it into action.

“It’s always wonderful to discover new information about the cause of a disease or class of diseases,” Roth told me. “And it’s particularly encouraging when we have the possibility of modifying the cause with existing therapies to reduce the likelihood that the disease occurs.”

Previously: Patient is “living to live instead of living to survive” thanks to heart repair surgery, Little hearts, big tools and When ten days = a lifetime: Rapid whole-genome sequencing helps critically ill newborn
Photo by emdot

Chronic Disease, Palliative Care, Parenting, Pediatrics

Missing out on “normal”: Advice from an expert on how to help kids with serious illnesses

Missing out on "normal": Advice from an expert on how to help kids with serious illnesses

Erica Medina and mom Jan 2012 #2When I first met Erica Medina in 2012, she was already practiced at living in two worlds. Then 17, she loved the ordinary teenage realm of high school classes, basketball and volleyball games, and trips to the mall with her friends. But since her diagnosis with juvenile idiopathic arthritis at age 11, she had also spent a lot of time in the medical world, where she and her doctors struggled to manage the pain caused by a disease that has no cure.

The story I wrote about Erica explained how the two worlds sometimes collided:

Back pain made it taxing to sit through school lectures, go on field trips or walk through the mall with friends. It wasn’t just the pain that bothered her: “When I was younger I hated taking my meds,” Erica said, adding that it felt like “giving up” to take pain medicine.

Stephanie [Erica’s mom] was glad Erica’s doctors tackled this issue head-on. “They convinced her that treating pain has nothing to do with weakness,” she said.

Although juvenile idiopathic arthritis is fairly rare, Erica’s longing for normalcy is not. Children and teenagers with all kinds of chronic and serious conditions have the same desire, says pediatric psychologist Barbara Sourkes, PhD, who directs the palliative care program at Lucile Packard Children’s Hospital Stanford.

A big part of Sourkes’ role is to help children, teenagers and their families navigate the divide between living with a difficult diagnosis and simply being a kid. She’s summarized her insights about this in a thoughtful piece on the blog for Digging Deep, a publication designed to help kids facing health challenges. Young people like Erica “commute” between the normal and medical worlds, “an extraordinary challenge,” Sourkes says. From her piece, here is some of her advice for families and others on how to help:

Be aware and sensitive to the importance of feeling “normal” – as normal as possible – for all children and adolescents living with illness. While we typically focus more on adolescents’ desire to “fit in,” even very young children are sensitive to being “different.” Help them focus on and remember what aspects of their lives – and of themselves – are still the same despite the illness.

“Missing out on things” comes in two categories: (1) missing a specific, often special event or activity (e.g. a celebration, a trip) and (2) missing out on life in general (day-to-day daily life, in all its routine).

Adults tend to focus more on the first category, in part because these are events that stand out from the backdrop of daily life. Allow the child to express disappointment / anger / sadness at the prospect of missing the event – do not try to minimize these feelings. After the event, it is very important to let children know that people asked about them and that their presence was missed. It makes the “missing out on things” a little more shared and less one-sided. When realistically possible, promise the child that they will participate in a similar event at a future time.

The second category of “missing out on life in general” is more ongoing and subtle, and probably has more impact on adolescents than on young children. It is also harder to address, since it encompasses all the frustration and sadness of the impact of the illness. Most important is simply to listen to what the children say, without trying to distract them or “problem solve” or cheer them up. These are times that they may just want to be heard and to have their hardship acknowledged.

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Neuroscience, Pediatrics, Research

Tutoring changes the brain in kids with math learning disabilities

Tutoring changes the brain in kids with math learning disabilities

One-on-one tutoringA new Stanford study, publishing today in Nature Communications, sheds light on how to help children with math learning disabilities. One-on-one cognitive tutoring improves math performance in these children and also normalizes brain activity in several regions important for numerical problem solving, the research found.

The findings are important because math learning disabilities often fall off educators’ and parents’ radar. (Everyone has heard of dyslexia, but its numerical equivalent, dyscalculia? Not so much.) Yet math learning disabilities can hamper a child’s ability to gain basic life skills such as managing time and money, and can prevent children from growing up to pursue math- and science-related careers.

The new study is similar to another recent experiment that demonstrated alleviation of math anxiety with tutoring. Both studies are the work of the Stanford MathBrain Project, directed by Vinod Menon, PhD. Teresa Iuculano, PhD, a postdoctoral scholar working with Menon, is the new study’s lead author.

In the new research, 30 children in third grade received eight weeks of one-on-one tutoring in basic arithmetic skills; half of the kids had math learning disabilities and half did not. The instructors adjusted the sessions’ pace and emphasis individually for each child, helping students past bottlenecks in their learning without making them feel like they might be falling behind their peers. All of the children got MRI brain scans before and after tutoring.

Before tutoring began, the kids with math learning disabilities had abnormal function in a network of brain areas involved in solving numerical problems, including the parietal, prefrontal and ventral temporal-occipital areas. Kids without math learning disabilities did not show these problems. After tutoring, the differences between the two groups’ brain scans disappeared. The children’s math performance also improved, in sync with the brain changes.

These findings suggest that tutoring actually fixes the brain issues at the root of math learning disabilities, rather than providing children with a work-around that circumvents the real problem.

“We demonstrate that, in parallel with performance normalization, 1:1 tutoring elicits extensive functional brain changes in children with math learning disabilities, normalizing their brain activity to the level of neurotypical peers,” the researchers wrote in their paper.

The scientists want to conduct follow-up studies to find out how long the effects of tutoring last. Their new discoveries also lay a framework for studying how to intervene in other forms of learning disabilities.

Previously: Stanford team shows that one-on-one tutoring relieves math anxiety in children, Stanford team uses brain scans to forecast development of kids’ math skills and New research tracks “math anxiety” in the brain
Photo by U.S. Department of Education

Clinical Trials, Mental Health, Parenting, Pediatrics, Research, Stanford News

Parents can help their teens recover from bulimia, say Stanford researchers

Parents can help their teens recover from bulimia, say Stanford researchers

Mom&teenTeenagers with bulimia nervosa benefit from their parents’ help in stopping their eating disorder. In fact, a therapy that involves parents works better for teens than one that does not, according to the first large head-to-head comparison in adolescents of two well-known bulimia treatments.

The findings are described in a study of 130 young people with bulimia that was published last week in the Journal of the American Academy of Child and Adolescent Psychiatry.

The research, which was jointly led by Stanford’s James Lock, MD, PhD, and a longtime collaborator, Daniel Le Grange, PhD, compared an approach tailored to teens with one commonly used in adults. In family-based therapy, the bulimia patient and a parent work together to stop the disordered eating behavior. In contrast, in cognitive behavioral therapy, which is widely recognized as the best approach for bulimic adults, there is more focus on changing abnormal thoughts about food and less emphasis on behavior change.

At the end of six months of treatment, 39 percent of patients in family-based therapy had abstained from the binge-and-purge cycle of bulimia for at least four weeks. Only 20 percent of those in the cognitive behavioral therapy group had done the same. The gap persisted six months after treatment ended, though it seemed to have closed by a year after the end of treatment.

Lock, who directs the Comprehensive Eating Disorders Program at Lucile Packard Children’s Hospital Stanford, said the findings are not surprising, given that teens are at a different stage of the illness and have different cognitive capabilities than adults with bulimia. But they are very important, since they suggest that the family-based approach is a faster way for young patients to recover from bulimia. From our press release about the study:

“The strategy for cognitive behavioral therapy requires a fair amount of abstract reasoning, motivation and persistence that often has not reached full capacity in teens,” [Lock] said, adding that doctors may need to decide on a case-by-case basis whether a teen would benefit from one treatment versus the other. “The cognitive and developmental context is very different for teens than for adult patients,” he said.

And it’s normal for teenagers to need their parents’ assistance in navigating difficult situations, he added. “The big take-home message is that families can really help their kids with bulimia nervosa.”

Previously: Family therapy an effective way to treat anorexic teens, Incorporating the family to help teens overcome eating disorders and Families can help their teens recover from anorexia, new study shows
Photo by J.K. Califf

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