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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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Infectious Disease, Medicine and Society, Parenting, Public Health, Research, Stanford News

California’s vaccination exemptions cluster in white, affluent communities

California's vaccination exemptions cluster in white, affluent communities


California’s measles epidemic was no fluke; between 2007 and 2013 the percentage of kindergarteners using a “personal belief” exemption to enroll in school without vaccinations doubled.

In that year, 3 percent of kindergarteners entered school unvaccinated. In some schools, the percentage of vaccinated children was so low that it threatened herd immunity, or the ability for a population to keep a pathogen at bay, according to Stanford health-policy researcher Michelle Mello, PhD, JD.

To understand the rapid increase, Mello worked with a team led by Tony Yang, ScD, with George Mason University. Their research is published today in the American Journal of Public Health.

They found the highest resistance to vaccinations among white, affluent communities. In contrast to previous studies, however, they did not find a correlation between higher levels of education and vaccine exemptions.

“Beliefs about vaccination risk tend to be more entrenched among certain communities of mothers,” Mello said. The study didn’t investigate reasons for seeking exemption, but other studies suggest some mothers in affluent communities may believe they can adequately protect their children through “intensive parenting techniques” such as an organic diet and restricting contact with sick children, Mello said.

Although California eliminated the personal belief exemption this summer in a broad-reaching law that requires all medically eligible school students to be vaccinated, the study speaks to how other states might approach the problem of vaccine exemptions, Mello said.

Similar clusters of vaccine resistance exist elsewhere and the findings could help public health agencies refine outreach methods, she said. For example, by specifically targeting local groups and reaching out to community leaders, officials may have more success providing education about vaccine risks and benefits, Mello said.

The results are particularly striking given the history of vaccination efforts, she said. In the first half of the twentieth century, public health officials struggled to ensure vaccines reached disadvantaged communities. Now, as fear of the targeted diseases has paled, parents may be more fearful of vaccines, leaving the entire population vulnerable.

Previously: Infectious disease expert discusses concerns about undervaccination and California’s measles outbreak, Stanford researchers analyze California’s new vaccine law and The earlier the better: Study makes vaccination recommendations for next flu pandemic
Photo by woodleywonderworks

Health and Fitness, Nutrition, Parenting

How parents and kids can have a happier – and healthier – Halloween

How parents and kids can have a happier - and healthier - Halloween

Tangarine pumpkin 560x372When I was a kid, the ghosts and ghouls of Halloween were the scariest things around. Now that I’m older, the terrors of Halloween have taken on a different form: Pumpkin-shaped pails that put fun-sized candies within easy reach, Halloween-themed cupcakes and cookies too cute to be “bad” for you and bulk bags of holiday treats at bargain prices.

If you’re a parent who’s trying to maintain a healthy lifestyle for your kids and yourself, these treats can quickly eat away all the hard work you put into developing healthy diet habits. So how can you get through this season of excess eating unscathed? On the Healthier, Happier Lives Blog, Shiri Sadeh-Sharvit, PhD, a clinical psychologist with Stanford’s Eating Disorders Research Program, offers these tips:

Be flexible

Parenting is all about flexibility. Just as you plan on going on a trip, but something happens and you find yourself modeling to your children how you adapt to a changing environment, Halloween is not a challenge most parents have not dealt with thus far. You have probably spoken in the past with your child about how your habits and preferences as a family may be different from their friends’; you have likely taught them about the food pyramid and how different foods affect their bodies; and you have already experienced making decisions that your kids did not like.

Know your limits

A possible approach to Halloween is comprised of first knowing your limits – how many sweets and candies you think would be OK for your child? The answer may change according to your child’s age. For younger children, providing smaller baskets, allowing only a few treats during Halloween and saving a few treats for the following weeks would be acceptable. With older children, you can discuss their ideas and understandings how to go about the sweet celebration.

Recognize there’s more to Halloween than food

When you and your children have a clearer understanding of your approach to Halloween, take this external opportunity to have fun! Wear a costume, extend your “persona” boundaries, and enjoy the non-food parts of this wonderful celebration. After all, isn’t this what Halloween is all about?

Previously: Eat well, be well and enjoy (a little) candyTips from a doctor (and a mom) for a safe Halloween and How to avoid a candy-coated Halloween
Photo by Pietro Bellini

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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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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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

In the News, Medicine and Society, Nutrition, Parenting, Research, Women's Health

Research elaborates on how moms can protect their daughters’ body image

Research elaborates on how moms can protect their daughters' body image

6945839301_9d61091329_zIt’s been my experience that women struggle with their body image at some point on the way from girlhood to womanhood – this may be brief and exploratory, or get tangled with eating disorders and other destructive behaviors. When I had a period of bulimia in my early 20s, I reflected on (among other things) my mother’s relationship with food and body image, and so some new research from Ben-Gurion University in Israel struck a chord.

Maia Maor, PhD, a sociologist, and Julie Cwikel, PhD, a professor of social work and director of the Center for Women’s Health Studies and Promotion, invited adult mother-daughter pairs to reflect on various strategies the mothers used to instill resilience about body image in their daughters. The researchers identified five methods commonly used to resist or reject negative and oppressive messages about body image:

  1. Filtering: being cautious and sensitive regarding body image issues 
  2. Transmitting awareness of the dangers of eating disorders, which can cause illness and death
  3. Positive reinforcement, using affirmative language in regard to their daughters’ bodies
  4. Discussion: providing tools for criticism of dominant body-related messages
  5. Positivity: shifting the focus of food and body-related discussions away from weight loss and towards health and taking pleasure in food. 

In a press release from last week, Maor explained that “the focus on protective strategies was intended to achieve two goals: to emphasize the positive in mother-daughter relationships and to identify a repertoire of strategies available to parents and allied health professionals who wish to help their daughters or young women build a stable, positive body image.”

Feelings about food and bodies have long chains of intergenerational transmission. According to the release, “some of the mothers in the study recalled how their own mothers’ negative comments to them about eating too much led them to associate food with guilt and bad feelings. They raised their own daughters by instead talking about the quality of food, importance of food choices and its relationship to developing respect for their own bodies.”

The study appears in the journal Feminism & Psychology.

Previously: Incorporating the family in helping teens overcome eating disorders, Stanford study investigates how to prevent moms from passing on their eating disorders, Promoting healthy eating and a positive body image on college campuses, What a teenager wishes her parents knew about eating disorders, and Social website shown to boost teen girls’ body image
Photo by Thanasus Anastasiou

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

Sleep-deprivation and stress among factors contributing to smoking relapse after childbirth

Sleep-deprivation and stress among factors contributing to smoking relapse after childbirth

2473235415_0584b78298_zSmoking can make it more difficult to get pregnant and it can contribute to complications after conception and endanger the health of babies as they grow. For these reasons, many women quit smoking when they are trying to conceive and during pregnancy. But an estimated 40 percent of women in the United States who kick the nicotine habit for the health of their unborn child relapse within six months after delivery.

New research published in the journal Addiction suggests that the stress of becoming a parent could be a significant factor in why some moms resume smoking after childbirth. In the study, British researchers interviewed 1,000 mothers about factors that influenced their relapse or contributed to them staying smoke-free. Lead researcher Caitlin Notley, PhD, discussed the findings in a PsychCentral article:

One of the most striking things that we found is that women’s beliefs about smoking are a major barrier to remaining smoke-free. Many felt that smoking after the birth of their child was acceptable provided they protected their babies from secondhand smoke.

Their focus is, admirably, on the health of the baby, but they often do not think about the long-term health consequences for themselves as mothers.

We also found that women who saw smoking as a way of coping with stress were more likely to relapse. And that feeling low, lonely, tired, and coping with things like persistent crying were also triggers. Women reported that cravings for nicotine, which had lessened or stopped during pregnancy, returned.

The majority of women who had successfully remained smoke free said that the support of their partner was a strong factor. Partners who gave up smoking, or altered their own smoking behaviors, were a particularly good influence. And those who helped ease the stress of childcare were also praised by women who had resisted the urge to light up

In addition to receiving help from their partners, moms said support from health professionals was another positive contributor to them being able to resist urges to smoke and manage stress.

Previously: Study shows mothers receiving fertility treatments may have an elevated risk of depression, Examining how fathers’ postpartum depression affects toddlers, A telephone lifeline for moms with postpartum depression, What other cultures can teach us about managing postpartum sleep deprivation and Is postpartum depression more of an urban problem?
Photo by Samantha Webber

Health Disparities, Medicine and Society, Parenting, Pediatrics, Public Health, Stanford News

Stanford med student helps turn pediatrics waiting room into a center for school-readiness

Stanford med student helps turn pediatrics waiting room into a center for school-readiness


For many low-income children, a pediatrician is the only professional they interact with before they start kindergarten. This fact inspired Jecca Steinberg, a second-year Stanford medical student and Schweitzer Fellow, to think about how that interaction could improve these children’s school readiness, which often lags behind that of their peers. If these kids could be equally well-prepared for kindergarten, their potential for economic mobility would skyrocket.

Now, in an innovative collaborative effort, the pediatrics waiting room of Fair Oaks Health Center in Redwood City, Calif. is being turned into a learning center. According to previous research conducted by the Stanford Pediatric Advocacy Program, the clinic’s patient population includes more than 900 low-income children between the ages of 2 and 5; surveys indicate that only 31 percent participated in any kind of formal pre-school education and 82 percent were not school-ready by kindergarten.

In collaboration with Neel Patel, MD, the medical director at the clinic, Steinberg reached out to Stanford art practice lecturer Lauren Toomer, MFA, who volunteered her time and talent to produce a mural that will transform the drab waiting room into a space for learning opportunities. The mural incorporates letters, numbers, shapes, and images of the Redwood City community, as well as three interactive learning panels. Patel generously donated the funds for the supplies. See the prototype above; the actual mural will be finished by early October.

In a recent phone conversation, Steinberg explained to me that the mural project is one component of a larger project called Kinder Ready, which is part of Stanford’s Pediatric Advocacy Program led by Lisa Chamberlain, MD, MPH, and Janine Bruce, DrPH. (The work at Fair Oaks Clinic has been led by Stanford pediatrics residents Jaime Peterson, MD, and Ashley Case McClary, MD.) I asked her more about their efforts:

How did you get involved in this work?

I’d say my entire motivation for entering the field of medicine is centered on providing opportunities for socioeconomic mobility, and although health is an incredibly important aspect of that, it can’t be viewed in a vacuum as a solution. So these interdisciplinary efforts touch on everything I’m passionate about. For my first-year Stanford Medical Scholars research project, called community based participatory research, I set up a series of focus groups with low-income parents to talk to them about their conceptions of school readiness: what they think a role of a parent is, and how they think a pediatrician could help them.

Currently I help screen children for their school-readiness level, and I work with the parents to teach them different activities that they can do at home to promote their children learning. I’ve been working with Dr. Patel to include activities and interventions in well-child visits that parents can take home with them. We set them up with library cards, let them know about parent-child reading hours and mommy-and-me classes in the community, and make it easier to get a hold of books and other learning materials.

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In the News, Parenting, Patient Care, Pregnancy, Public Health, Women's Health

Low-tech yet essential: Why parents are vital members of care teams for premature babies

Low-tech yet essential: Why parents are vital members of care teams for premature babies

3297657033_081d4f3630_zThanks to recent advances in medicine, technology and research, most premature babies born in the United States face better odds of surviving than ever before. Yet, the number of premature births in the U.S. remains relatively high, with a rate that’s on par with that of Somalia, Thailand and Turkey.

For the parents of a premature baby, an early birth can transform what was supposed to be a happy event into a stressful one, says Henry Lee, MD, an assistant professor of pediatrics at Lucile Packard Children’s Hospital Stanford. In a recent U.S. News & World Report article penned by Lee, he discusses why it’s important for parents, and beneficial for the baby, when parents are active members of the child’s medical team:

Giving birth to a preemie, especially when it’s unexpected, leaves many parents feeling unprepared and helpless. But we make it clear very early. “You, the parent, are a critical part of our medical team.” That’s right. Even in the heart of Silicon Valley where we’re located, two of our biggest assets are decidedly low-tech workers: the baby’s mom and dad.

Including parents in the care of preemies is a standard that was unheard of in the early days of neonatology, but is now used in leading NICUs for one critical reason: It works.

Here’s an example of how parents contribute. Studies have shown that skin-to-skin care, also known as kangaroo care, can have beneficial effects on preterm neonates, including improved temperature and heart rate stability. In many NICUs, you will see babies – clad only in a diaper and covered by a blanket – placed prone position on the chest of either the mother or the father. This intimate method of care provides a preterm baby a natural environment for rest, growth and healing.

No matter when a baby is born, term or preterm, families know their children best. A parent’s contribution is critical to treating these most vulnerable of newborns.

Previously: How Stanford researchers are working to understand the complexities of preterm birthNew research center aims to understand premature birth and A look at the world’s smallest preterm babies
Photo by Sarah Hopkins

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