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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

Humor, Parenting, Science

A humorous look at how a background in science can help with parenting

A humorous look at how a background in science can help with parenting

Scientist-moms out there might enjoy this playful (tongue-in-cheek) Huffington Post essay on how having a science degree made the writer a better parent. I had to chuckle at Sarah Gilbert’s list of how she’s found uses for the sciences in her day-to-day life:

Physics: Knowing that my house will return to complete disorder immediately after I clean it, because entropy.

Biology: Knowing everything my baby ate by the contents of her diaper, because scat identification.

Neuro-psychology: Knowing that my toddler freaking out over sandwich crusts is just a phase, because frontal lobe development.

Statistics: Knowing that the chance of having a baby brother is 50/50 no matter what my mother-in-law thinks, because mutually exclusive events.

Astronomy: Knowing that the woman judging me by my yogurt-spattered shirt isn’t the only thing in the universe, because cosmology.

Parenting, Sleep, Women's Health

What other cultures can teach us about managing postpartum sleep deprivation

What other cultures can teach us about managing postpartum sleep deprivation

New_mom_072114Prior to becoming a mom, I felt fully confident that caring for a newborn would be less demanding than, or at least equal to, the physically grueling trainings from my college soccer days or my sleepless year of graduate school. But I soon learned that both of these experiences paled in comparison to the exhaustion I encountered after the arrival of my 8-pound-plus bundle of joy. So I was interested to read a recent Huffington Post blog entry from the Stanford Center for Sleep Sciences and Medicine examining how mothers in other countries cope with postpartum sleep deprivation.

In the entry, Mara Cvejic, MD, a neurologist at the University of Florida and former sleep medicine fellow at Stanford, notes that although sleep deprivation can profoundly affect cognitive function and mood, the brain of a postpartum mom is actually growing. She writes:

… despite all the formidable evidence of sleep deprivation in the everyday person, the scientific evidence of what happens to the postpartum brain is positively astounding — it thrives. A study published by the National Institutes of Health in 2010 actually shows that a mother’s brain grows from just 2-4 weeks to 3-4 months post delivery without any significant learning activities. The gray matter of the parietal lobe, pre-frontal cortex, hypothalamus, substantia nigra, and amygdala all form new connections and enlarge to a small degree. The imaging study confirms what animal studies have shown in the past — that these brain regions responsible for complex emotional judgment and decision-making actually bulk up with use. Rationale to the study shows that mothers who have positive interactions with their offspring — soothing, nurturing, feeding, and caring for them — are performing a mental exercise of sorts. Their learned coping skills in the face of novel child-rearing actually muscularize their brain.

She goes on to outline how new moms from Bulgaria to Sweden, and everywhere in between, turn to “hammocks, spa treatments, hired help, warm foods, arctic cradles, and cardboard” to cope with a lack of sleep. Personally, I’m in favor of Americans adopting this Malaysian tradition:

Food and warmth are also a focus of the Malaysian confinement of pantang. Steeped in the belief that the women’s life force is her fertile womb, she undergoes a 44-day period of internment to focus on relaxation, hot stone massage, lulur (full body exfoliation), herbal baths, and hot compresses. Typically a bidan, what can only be described as a live-in midwife and nanny combined, is hired to attend on the new mother. This is sometimes a family member, such as her mother or mother-in-law.

Previously: The high price of interrupted sleep on your health, What are the consequences of sleep deprivation? and Study: Parents may not be as sleep-deprived as they think
Photo by sean dreilinger

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

Parenting, Public Health, Research, Sleep

The high price of interrupted sleep on your health

The high price of interrupted sleep on your health

dad_baby_nap_time

As the mother of a 10-month-old, I’m constantly answering the question: Is your son sleeping through the night? And, much to my dismay, I have to repeatedly answer, “No.” So I was interested, and considerably alarmed, to read about new findings showing that interrupted sleep could be as harmful to your physical health as a lack of sleep.

A Time article published today describes the study and the Tel Aviv University researchers’ results:

Students slept a full eight-hours one night followed by a night of interrupted sleep in which they received four phone calls directing them to complete a brief computer exercise before returning to bed. The morning after both nights, the volunteers completed tasks to measure their attention span and emotional state — results proved that just one night of interrupted sleep had negative effects on mood, attention span and cognitive ability.

[Lead researcher Avi Sadeh, PhD,] believes that several nights of fragmented sleep could have long-term negative consequences equivalent to missing out on slumber altogether. “We know that these effects accumulate and therefore the functional price new parents — who awaken three to ten times a night for months on end — pay for common infant sleep disturbance is enormous,” he said in a statement.

In addition to parents with young children, the findings are applicable to people in certain age groups that experience fragmented sleep, as well those with jobs where frequent night wakings are common.

Previously: Stanford expert: Students shouldn’t sacrifice sleep, What are the consequences of sleep deprivation? and Study: Parents may not be as sleep-deprived as they think
Photo by Christina Spicuzza

Parenting, Pregnancy, Technology, Women's Health

First-time moms often seek information online prior to first prenatal visit

First-time moms often seek information online prior to first prenatal visit

pregnant_laptopWhen I was eight weeks pregnant with my first child, I walked into my obstetrician’s office for my initial prenatal visit. I vividly remember being exhausted and sucking on watermelon lollipops for the entire two-hour appointment in an effort to relieve my morning sickness. While in the office, a nurse handed me a thick folder stuffed with various pamphlets and fact sheets on everything from nutrition to genetic testing – but much of the information reviewed wasn’t new to me. I’d already logged plenty of hours online reading about such topics.

So I was interested to read today about findings of a Penn State study showing that many other first-time moms also turn to “Dr. Google,” as well as social media, to find answers during the early weeks of their pregnancy. Women also continued turning to the Internet for information after their doctor visit and found traditional literature lacking. From a release on the study, which appears in the Journal of Medical Internet Research:

Following the women’s first visit to the obstetrician, many of them still turned to the internet—using both search engines and social media—to find answers to their questions, because they felt the literature the doctor’s office gave them was insufficient.

Many of the participants found the pamphlets and flyers that their doctors gave them, as well as the once-popular book What to Expect When You’re Expecting, outdated and preferred receiving information in different formats.

They would rather watch videos and use social media and pregnancy-tracking apps and websites.

“This research is important because we don’t have a very good handle on what tools pregnant women are using and how they engage with technology,” says [Jennifer Kraschnewski, MD]. “We have found that there is a real disconnect between what we’re providing in the office and what the patient wants.”

Noting the prevalence of misinformation online, Kraschnewski added, “We need to find sound resources on the Internet or develop our own sources” [to refer patients to].

Previously: Text message reminders shown effective in boosting flu shot rates among pregnant women and Examining the effectiveness of text4baby service
Photo by Adam Selwood

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

Clinical Trials, Nutrition, Parenting, Pediatrics, Research, Women's Health

Stanford study investigates how to prevent moms from passing on eating disorders

Stanford study investigates how to prevent moms from passing on eating disorders

veggie-stirfryResearchers have known for some time that women who have previously had eating disorders face a special set of challenges when they begin feeding their own children: They may unintentionally pass on problematic eating behaviors to their kids.

Now a Stanford research team is studying how to help these moms. They are recruiting families with a child between the ages of 1 and 5 whose mother had anorexia nervosa, bulimia nervosa or binge-eating disorder in the past. In the 16-week study, the researchers will work with both the mother and her partner to build healthy family interactions around food.

From our announcement about the study:

“The data on feeding practices of mothers who have had eating disorders are very worrying,” said Shiri Sadeh-Sharvit, PhD, a visiting scholar at Stanford who is leading the new study. “These mothers are good parents who want only the best for their children, but they struggle with eating-disorder thinking. It’s something that comes and blurs their parenting.”

Prior research has shown that mealtime conflict is more common in families in which the mother has had an eating disorder. These mothers may overfeed or underfeed their children, though underfeeding is more predominant. They also have more difficulty recognizing hunger and fullness cues in themselves and their children, which makes it harder for them to help their kids learn to respond to these sensations. Children whose mothers have had eating disorders are more likely than other kids to be dissatisfied with their bodies and engage in emotional eating, binge eating or restrictive eating.

Sadeh-Sharvit is collaborating with James Lock, MD, PhD, who has a long track record of demonstrating the effectiveness of eating-disorder treatments that involve the patient’s family in the treatment process.

Local families who are interested in participating in the research can contact Sadeh-Sharvit at (650) 497-4949 or shiri_sade@yahoo.com for more information. Stanford’s Eating Disorders Research Program also maintains an online list of all of their eating-disorder studies that are currently seeking participants.

Previously: Promoting healthy eating and a positive body image on college campuses, A growing consensus for revamping anorexia nervosa treatment and Story highlights need to change the way we view and diagnose eating disorders in men
Photo by Indiana Public Media

Chronic Disease, Parenting

“I’d rather bury my child than leave him behind”: Mother of developmentally disabled child on redefining parenthood

"I'd rather bury my child than leave him behind": Mother of developmentally disabled child on redefining parenthood

As a mom of two, I found myself doing a double-take when I came across a recent Huffington Post headline: “Bury My Son Before I Die.” In the moving, difficult-to-read (and, presumably difficult-to-write) piece, the mother of a boy with lissencephaly who is “developmentally… like an infant in a 15-year-old body” describes caring for him and worrying what might happen to him as he grows older. “It goes against everything we believe about motherhood, but I’d rather bury my child than leave him behind,” she writes, before going on to explain:

I used to worry about Benjamin dying, but now, 15 years in, I worry about him surviving beyond my husband and me. Only we have comforted Benjamin through daily seizures and seven surgeries. We are his one true voice. No one can understand Benjamin the way we do.

I have learned to embrace motherhood with brutal honesty. I don’t actually want to see my son take his last breath. I don’t want to know life without him. For as long as I live, I will do whatever I can to keep Benjamin healthy and give him the best possible quality of life. His happiness is my happiness. He is no less than anyone else, deserves every right and consideration. As Benjamin’s advocate I can guarantee a strong proactive force. When I’m gone, I can do no more.

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