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Parenting, Pediatrics, Pregnancy

Losing Jules: Breaking the silence around stillbirth

My birthday is coming, and I’m dreading it. I can’t celebrate; I’d like to go to bed and wake up twenty-four hours later. It’s not because I’m a year older. It’s because it’s the anniversary of the death of my second child, Jules.

My experience is nothing unique. Death anniversaries haunt most people: the anniversary of the death of a parent; the anniversary of a friend’s suicide, the day a father or husband died in battle. My nightmare began on the morning of my birthday, three years ago. I was beginning my 38th week of pregnancy, and I felt great. All signs pointed to a normal, healthy baby. I woke up early the morning of July 30 and my water broke. With great excitement, I grabbed my overnight bag and headed to the hospital with my husband and my (then) 4 1/2 year old son, Miles.

Although I’m not religious, I baptized Jules with my tears and told him how much I loved him. Then I did the hardest thing I’ve ever had to do in my life: I put him down, and I left.

We checked into the obstetric intake bay, and the nurse began to hook me up to a fetal monitor. She couldn’t get it to work and remarked that it must be malfunctioning. She brought in another monitor, and she couldn’t pick up the baby’s heartbeat on that one either. Then she brought in an MD with an ultrasound. I looked at the image of my beautiful son on the screen. There was no pulsing heart in his rib cage. He was dead.

I went into the kind of shock that people describe as “a bad movie.” Everything slowed down and became tunnel-like. I felt removed from the situation, almost observing the scene from a distance as the staff wheeled me to a room at the end of the maternity ward to deliver my stillborn child. I remember the rose a nurse placed on the outside of the door to mark that this room was different. She closed the door when the sounds of newborns drifted down the hall to my room. She was extremely compassionate and held me through some of my labor pains. I asked for Pitocin to speed the birth, and Jules was born quickly. His death was ruled a cord accident.

Jules was so beautiful, so perfect and so still that at first I was afraid to hold him. The staff wrapped him in a hospital blanket and put him in the baby gurney. A pediatrician came to give him a newborn exam with a mix of horror and grief on his face. Cautiously, I picked Jules up and held him and rocked him for a very long time. I desperately didn’t want to leave him there, and I desperately wanted to hold my living son, Miles, who was at a friend’s house. Although I’m not religious, I baptized Jules with my tears and told him how much I loved him. Then I did the hardest thing I’ve ever had to do in my life: I put him down, and I left.

My husband and I went through a special kind of hell in the weeks and months that followed. My milk came in, and I had to bind my swollen breasts and ice them for days. I couldn’t sleep, and when I did, I had nightmares. Worst of all, we had to explain to our son Miles that baby Jules was not coming home from the hospital. Sweet Miles began our healing when he thought about this for a few moments, and said, “So, Jules is now a twinkle in Papa’s eye.”

The community wrapped its arms around our family. Our house filled with flowers, and we had more food than we knew what to do with. What surprised me the most was how many women reached out to me to share their own stories of stillbirth. In the first 24 hours after we got home, our neighbors came over to talk to us about their baby dying in-utero near term. Over the course of the next few months, I spoke to many women who had lost babies, mainly by stillbirth, but not exclusively. I had no idea that in this age of medical advancement 1 in every 167 babies in the United States is stillborn (.pdf). Just over half a percent (.6 percent) doesn’t sound like a lot – until it’s you. Statistically, this has probably happened to someone you know, but they probably don’t talk about it. I know of three people – either in my circle or once removed – who have had stillbirths since mine.

I describe the initial weeks after Jules’ death in military terms: It felt like our family took a direct hit. Over time, I became skilled in answering people when they asked, “So, how’s your baby?” Those questions lasted for a year and a half. I sought counseling with health professionals who had experienced stillbirth or infant death. I’m not Jewish, but I went to talk to a Rabbi. She helped me to understand a beautiful philosophy: that we owe it to the dead to try and live well and fully. I’m still here, and I shouldn’t squander my time. It’s not always easy, especially when someone asks, “So, you have just the one?” But I work hard to live well and fully every day, especially on the anniversary of what would have been a joint birthday for Jules and me.

Polly Stryker works as a producer and editor at KQED Radio, an NPR affiliate in San Francisco, where she lives with her family. She is writing a book called “Losing Jules” for her son, Miles.

Previously: A call to “break the silence of stillbirth”
Image of Jules’ footprints in featured entry box courtesy of Polly Stryker

CDC, Nutrition, Pediatrics, Public Safety, Research, Stanford News

“Happy Meal ban”: Where are we now?

"Happy Meal ban": Where are we now?

MuppetBabiesA newly released Centers for Disease Control report of a study conducted at Stanford has examined the effects of San Francisco’s 2010 “Happy Meal ban.” The ban prohibited the free distribution of toys with unhealthy meals; the fast-food restaurants McDonald’s and Burger King instead sold the toys for 10 cents. Though neither restaurant complied with the ordinance’s specific calls for changes in nutritional content, improvements have been made.

As reported by SFGate.com:

…over the study’s two-year period, McDonald’s in particular made big changes to its Happy Meals, said [Jennifer Otten, MD,] of the University of Washington School of Public Health — first in California, then nationally.

The fast food giant cut the amount of French fries it serves in Happy Meals in half, replacing them with apples; stopped serving caramel sauce with apples; and began offering nonfat chocolate milk to customers. Otten said those substitutions were “pretty dramatic,” — they reduced the calories in a Happy Meal by 110, and cut the sodium and fat content of the meal as well.

Otten and her colleagues, including senior author Abby King, PhD, concluded in the study, “Although the changes…  did not appear to be directly in response to the ordinance, the transition to a more healthful beverage and default side dish was consistent with the intent of the ordinance. Study results… suggest that public policies may contribute to positive restaurant changes.”

Previously: How fast-food restaurants respond to limits on free toys with kids’ meals, Toying with Happy Meals, How food advertising and parents’ influence affect children’s nutritional choices and Living near fast food restaurants influences California teens’ eating habits
Photo by Ursala Urdbeer

Patient Care, Pediatrics, Research, Technology

How virtual visits can help children in the hospital reduce stress, speed up recovery

How virtual visits can help children in the hospital reduce stress, speed up recovery

Past research has shown that patients in the hospital experience less nerve-related pain and recover more quickly when they have visitors. Now findings recently published in Pediatrics show that virtual visits are equally beneficial.

In the study, researchers at the University of California, Davis Children’s Hospital analyzed the effectiveness of Family-Link, a program that provides webcams, laptops and Internet access to pediatric patients. Researchers assessed the anxiety levels of roughly 230 children who used the teleconferencing service and 135 who did not when they were admitted to the hospital and discharged using the Parent-Guardian Stress Survey. According to a Futurity post:

Overall, children who used Family-Link felt less stressed compared to those who did not use the program. The effect was even more pronounced for children who lived closer to the hospital and had shorter hospitalizations. This group experienced a 37 percent stress reduction when using Family-Link.

“This study shows that we have another tool to help children during their hospital stays,” says Yang. “The improvement in stress scores shows that Family-Link is really helping many children and might possibly be improving outcomes.”

Previously: Using the iPad to connect ill newborns, parents

Nutrition, Pediatrics, Stanford News, Videos

Where is the love? A discussion of nutrition, health and repairing our relationship with food

Where is the love? A discussion of nutrition, health and repairing our relationship with food

Maya Adam, MD, a lecturer on child health and nutrition in Stanford’s Program in Human Biology, associates food with love. “Through food, we learn about where we come from, who we are, and in many ways who we want to be,” she said in a recent TEDxStanford talk. But, as in human relationships involving love, our encounters with food may involve fighting – and even tragedy and betrayal, she noted. She pointed to an antacid commercial’s presentation of a “food fight” between foods we consume to taste but that cause us indigestion and larger health problems over time.

Early in her medical training, Adam said, she learned that “pain is a protective sensation; it helps us to avoid things that could cause damage to our bodies.” Ignoring pain or masking it with antacids, as the ad suggests, sends the message that “we should medicate that sensation away and continue consuming the foods that are hurting us.” What’s more, she said, a cultural “war on food” is depleting our time, energy and joy around eating, all in the midst of an obesity epidemic.

In her talk, Adam, who teaches a massive open online course called “Child Nutrition and Cooking,” recommends examining our modern-day relationship with food, which has grown distant. Regaining a healthy relationship involves learning where food comes from and what’s inside it, and taking care to prepare and cook real food for yourself and loved ones, she said: “May the foods you eat be worthy of you, and may they be made with love.”

Previously: A spotlight on TEDxStanford’s “awe-inspiring” and “deeply moving” talks and Free Stanford online course on child nutrition & cooking

Genetics, In the News, Pediatrics, Research

New Yorker story highlights NGLY1 research

New Yorker story highlights NGLY1 research

PackardGirl260x190The new issue of the New Yorker, out today, includes a fascinating medical story with a notable Stanford connection. As we’ve described before, a team of scientists from institutions around the world reported earlier this year on their discovery of a new genetic disease, NGLY1 deficiency. Stanford’s Gregory Enns, MB, ChB, was co-lead author of the paper describing the new finding, and one of his patients, Grace Wilsey, was among the small group of children in whom the disease first was identified. Grace’s inability to make tears when she cries was a key clue in unlocking the mystery of the disease.

But, as the New Yorker piece (subscription required) explains in detail, there’s much more to the story than that. In particular, it tells how the families of patients – especially Grace’s parents, Matt and Kristen Wilsey, and Matt and Cristina Might, who are the parents of index patient Bertrand Might – successfully encouraged researchers at different institutions to collaborate with each other in a way that advanced the discovery with exceptional speed. This was counter to the usual practice in science, the story explains. Typically, scientists avoid sharing data with competitors, even if doing so would advance the research:

If a team hunting for a new disease were to find a second case with the help of researchers from a competing lab, it could claim to have “solved” a new disease. But it would also have to share credit with competitors who may have done nothing more than grant access to existing data. When I asked [Duke University geneticist and NGLY1 deficiency co-discoverer Vandana] Shashi if she could imagine a scenario that would result in one research team’s publishing a paper with data from a different research group working on a similar project, she said, “Not that I can think of.”

David Goldstein [another Duke geneticist who collaborated with Shashi] added, “It’s not an overstatement to say that there are inherent conflicts of interest at work.” Daniel MacArthur, a genetics researcher at Massachusetts General Hospital, is even more blunt. “It’s an enormous deal,” he told me. “And it’s a big criticism of all of us, but it’s a criticism we all need to hear. The current academic publication system does patients an enormous disservice.”

Fortunately for patients like Grace and Bertrand, and for the doctors who want to help them, the culture is shifting. One marker of the shift is the NIH’s announcement earlier this month that it will be expanding its Undiagnosed Diseases Program to a network of seven sites across the country (including Stanford) and building in a requirement that all seven centers share data with each other.

Another is that researchers are realizing that families like the Wilseys and Mights will continue to make an impact. In fact, the Wilsey family has recently launched the Grace Wilsey Foundation to raise awareness about NGLY1 deficiency and promote investigation of possible treatments for the disease.

As Shashi puts it at the conclusion of the New Yorker story:

“Gone are the days when we could just say, ‘We’re a cloistered community of researchers, and we alone know how to do this.’”

Previously: NIH network designed to diagnose, develop possible treatments for rare, unidentified diseases and Crying without tears unlocks the mystery of a new genetic disease
Photo of Grace Wilsey courtesy of Lucile Packard Children’s Hospital Stanford

Ethics, Genetics, Medicine and Society, Parenting, Pediatrics, Stanford News

Genome testing for children: What parents should consider

Genome testing for children: What parents should consider

Genome testing: Would you do it?

Okay, next question: Would you have your child’s whole genome tested?

In the recent issue of Stanford Medicine News, Louanne Hudgins, MD, chief of medical genetics and director of perinatal genetics at Lucile Packard Children’s Hospital Stanford, weighs in on the issue: “I strongly advise parents against whole-genome testing for their children unless performed in the context of a medical evaluation following formal counseling regarding its utility, limitations and possible unrelated findings,” she said.

In the piece, Hudgins comments on privacy and ethics considerations, and explains why what we partially know (for instance, if your child is found to have a gene predisposing him or her to a disease) can sometimes provide more cause for worry or false hope than helpful or conclusive information.

The whole piece (a short one) is worth a read.

Previously: Stanford patient on having her genome sequenced: “This is the right thing to do for our family”, Personal molecular profiling detects diseases earlier, Stanford geneticist discusses genomics and medicine in TEDMED talk and Medical practice, patents, and “custom children”: A look at the future of reproductive medicine

Health and Fitness, Nutrition, Obesity, Parenting, Pediatrics, Stanford News

Childhood obesity expert to parents: Reduce your child’s screen time

Childhood obesity expert to parents: Reduce your child's screen time

screen-tvTake a few minutes to read a brief and informative piece about the negative health effects of too much screen time for children and how you can set boundaries for your kids – or perhaps yourself. In a Stanford Medicine News Q&A, pediatrician Thomas Robinson, MD, MPH, director of the Center for Healthy Weight at Lucile Packard Children’s Hospital Stanford, explains how watching TV or playing video games contributes to inactivity, overeating and obesity. Robinson also speaks to the modern-day concern of restricting access to screen devices that can also be educational tools, such as the iPad.

From the Q&A:

What’s the relationship between excessive screen time and childhood obesity?

It’s a true cause-and-effect relationship. The more time kids spend with screens, the less time they are spending being active. The best evidence supports two primary mechanisms—that kids eat more while watching screens and that exposure to food advertising leads to an increased eating of high-sugar, high-fat and calorie-dense foods. Lots of research shows that kids—and adults—eat more when distracted by a screen. So one of the most important things a family can do is eliminate eating while watching TV and other screens.

Previously:  Talking to kids about junk food ads, This is your 4-year-old on cartoons, Study: Too much TV, computer could hurt kids’ mental health, Does TV watching, or prolonged sitting, contribute to child obesity rates? and Paper explores effects of electronic media on kids’ health

Cancer, Clinical Trials, Pediatrics, Public Health, Research

Researchers call for broader age limits for cancer trials to increase participation of teenage patients

Researchers call for broader age limits for cancer trials to increase participation of teenage patients

Findings published today in the Lancet Oncology highlight the need to increase the flexibility of age limits for cancer trials so that more teenage patients have access to experimental treatments. “Right now too many of our young patients are needlessly falling through the gap between paediatric and adult cancer trials,” said Lorna Fern, PhD, who led the study and co-ordinates research for the Teenage and Young Adult Clinical Studies Group of the UK-based National Cancer Research Institute.

In the study (subscription required), researchers examined strategies to boost participation of teens and young adults diagnosed with cancer in clinical trials. The study involved 68,275 patients, aged 0-59 years, who were diagnosed with cancer within a five-year window. According to a release:

The study showed [trials designed with broader age limits] led to a 13 per cent rise in 15-19 year old cancer patients taking part in clinical trials between 2005 and 2010 (from 24 to 37 per cent), and a five per cent rise in 20-24 year olds (from 13 to 18 per cent). Children under 14 taking part in trials rose by six per cent (from 52 to 58 per cent).

This rise was due to the increase in availability and access to trials for young people, increased awareness from healthcare professionals, patients and the public about research and importantly the opening of trials with broader age limits which allow older teenagers and young adults to enter trials.

Fern added, “By encouraging doctors to take into account the full age range of patients affected by individual types of cancer, we’ve shown that it’s possible to design trials that include teenage cancer patients and, importantly, that better match the underlying biology of the disease and the people affected.”

Previously: High rates of incarceration among black men could be skewing study results, Stanford researchers examine disparities in use of quality cancer centers and NPR explores the need for improving diversity in clinical trials

Immunology, In the News, Infectious Disease, Parenting, Pediatrics, Public Health

Side effects of childhood vaccines are extremely rare, new study finds

Side effects of childhood vaccines are extremely rare, new study finds

Pneumococcus-vaccineAs you may have heard about elsewhere, a new paper published today on the safety of childhood vaccines provides reassurance for parents and pediatricians that side effects from vaccination are rare and mostly transient. The paper, a meta-analysis appearing in Pediatrics, updates a 2011 Institute of Medicine report on childhood vaccine safety. It analyzed the results of 67 safety studies of vaccines used in the United States for children aged 6 and younger.

“There are no surprises here; vaccines are being shown over and over again to be quite safe,” said Cornelia Dekker, MD, medical director of the vaccine program at Lucile Packard Children’s Hospital Stanford, who chatted with me about the study earlier today. “The safety record for our U.S.-licensed vaccines is excellent. There are a few vaccines for which they document that there are indeed adverse events, but the frequency is quite rare, and in almost all cases they are very easy to manage and self-limited.”

A Pediatrics commentary (.pdf) accompanying the new study puts the value of immunization in context:

Modeling of vaccine impact demonstrates that routine childhood immunizations in the 2009 US birth cohort would prevent ~42,000 deaths and 20 million cases of disease and save $13.5 billion in direct health care costs and $68.8 billion in societal costs.

The commentary goes on to contrast the risks of vaccines with the potential complications of vaccine-preventable diseases:

The adverse events identified by the authors were rare and in most cases would be expected to resolve completely after the adverse event. This contrasts starkly with the natural infections that vaccines are designed to prevent, which may reduce the quality of life through permanent morbidities, such as blindness, deafness, developmental delay, epilepsy, or paralysis and may also result in death.

The study found evidence against suspected links between vaccines and several acute and chronic diseases. For instance, the researchers found high-quality evidence that several different vaccines are not linked to childhood leukemia and that the measles, mumps and rubella (MMR) vaccine is not linked to autism. The DTaP vaccine is not linked to diabetes mellitus, and the Hepatitis B vaccine is not connected to multiple sclerosis, according to moderate-quality evidence.

The evidence does connect a few vaccines to side effects. For instance, the MMR, pneumococcal conjugate 13 and influenza vaccines are linked to small risks of febrile seizures, with the risk of such seizures increasing slightly if the PCV-13 and flu vaccines are given together.

“A febrile seizure can be quite alarming, but fortunately it does not have long-lasting consequences for child,” Dekker said, noting that the risk of such seizures from vaccines is around a dozen per 100,000 doses of vaccine administered.

The rotavirus vaccine is linked to risk of intussusception, an intestinal problem that can also occur with rotavirus infection itself. But the benefits of rotavirus vaccination “clearly outweigh the small additional risk,” Dekker said.

The study confirmed earlier research showing that some vaccines, including MMR and varicella, cause problems for immunocompromised children, such as kids who have HIV or who have received organ transplants. Since they can’t safely receive vaccines, this group of children relies on the herd immunity of their community to protect them.

“It’s not as if the parents of immunocompromised kids have a choice about whether to vaccinate,” Dekker told me. “They have to depend on others to keep immunization levels high, and that starts breaking down when more people hold back from having their healthy kids fully immunized.”

Dekker hopes the new findings will encourage more parents to have their healthy kids fully vaccinated.

Previously: Measles is disappearing from the Western hemisphere, Measles are on the rise; now’s the time to vaccinate, says infectious-disease expert and Tips for parents on back-to-school vaccinations
Photo by Gates Foundation

Cardiovascular Medicine, Genetics, Patient Care, Pediatrics, Research, Stanford News

When ten days = a lifetime: Rapid whole-genome sequencing helps critically ill newborn

When ten days = a lifetime: Rapid whole-genome sequencing helps critically ill newborn

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It’s an ‘edge-of-your-seat’ story: The newborn’s heart had stopped multiple times in the hours since her birth. Her doctors at Lucile Packard Children’s Hospital Stanford had tried everything to help her, but her situation was dire.

The baby had an unusually severe form of an inherited cardiac condition called long QT syndrome. The syndrome, which is most often diagnosed in older children or adults, can be caused by a mutation in any of several genes; until the doctors knew exactly which genetic mutation was causing the condition they wouldn’t know what drug would be most likely to help. The stakes were high: by her second day of life she’d received an implantable defibrillator and several intravenous drug infusions.

As cardiologist Euan Ashley, MD, PhD, explained to me:

The team literally tried everything we could think of to help this child, including trying every drug that could possibly make a difference. It was a heroic effort by a very diverse group of professionals.

The clinicians and researchers, including pediatric cardiologist Scott Ceresnak, MD, who managed the baby’s clinical care, realized it was critically important to identify the baby’s disease-causing mutation to learn which drug would be best for her. To do so, they dropped everything else they were doing and sequenced her entire genome to pinpoint the culprit within just ten days – an unprecedented feat. Ashley, who directs Stanford’s new Clinical Genomics Service as well as its  Center for Inherited Cardiovascular Disease, and pediatric cardiology fellow James Priest, MD, recently published the case study in the journal Heart Rhythm.

This is the future of genetic testing and we hope, the future of medicine.

Using customized commercial software and tools developed at Stanford, the researchers were able to zero in on a mutation in a gene called KCNH2 known to be associated with long QT. They also found another, novel mutation in a gene involved in determining the structure of the heart during development.

As Priest explained in an e-mail to me:

Whether it is a CT scan, x-ray, or genetic test, we work hard to make a diagnosis as quickly as possible when there is a critically-ill baby under our care. Whole genome sequencing returned this diagnosis in days instead of weeks. We were able to turn the raw sequence data into a diagnosis in about 12 hours.

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