Seattle Mama Doc

A blog by Dr. Wendy Sue Swanson.

A mom, a pediatrician, and her insights about keeping your kids healthy.

How Genetic Technologies May Change How We Approach Parenthood

Seattle writer Bonnie Rochman has a new, smartypants book on genetic testing. It’s not a “how-to,” per se, rather a storytelling look and near confessional at how confusing it can feel when you’re pregnant (or plan to be) and faced with the marketplace of ideas and opportunities for knowing more from genetic testing. Simply put, she articulates the quandary nestled in the “to know” or “not to know” more about your expected baby, genetically speaking.

In the book (and the podcast and TV seg she joined me for —  included below) Bonnie talks of her own journey as a mom but also interviews researchers, geneticists, families, expecting parents, and ethicists along the way. It’s researched; the pages of notes and references at the end could overwhelm, if you let them. Thankfully, the book reads like a story and yet Bonnie doesn’t shy away from complex ethical spider webs like the implications (for some) in getting tested for fatal diseases and the option to enter the abortion debate. More than anything, Bonnie takes on the reality that when it comes to prenatal genetic testing, the tests themselves, the official guidance, and the technology itself is moving faster than our public and medical understanding…

Who you are and where you seek care may change what advice you get. She explains why.

When I did a Google search on prenatal genetic testing after I read the book and prepared for the podcast and TV seg, I was led to sites that didn’t necessary help me understand more about what I would want to know. I found general, outdated lists. As far as I know as a pediatrician, there isn’t one site that helps expecting parents understand just when and what to test for and why. Thankfully, we use our obstetricians, family docs, genetic counselors and pediatric specialists to help guide us to the best ones. But I enjoyed the way this book empowered me as a mom. That I could learn about the science, feel out my own philosophies, and embroider my own ethics into these kinds of decisions themselves.

The book doesn’t stay at the surface. Cutting truths in this sentiment from Dr. Arthur Caplan (incidentally one of my professors when I studied medical ethics) included in the book:

As the bioethicist Arthur Caplan has noted, genetic information is ‘exquisitely sensitive.’ Worrisome genetic test results can make people feel that ‘they harmed their children, or that they themselves are flawed. Most people don’t feel that way if their kidneys start working inefficiently. They don’t say, ‘I’m a flawed human being.’ But they feel that way about their genes.

Bonnie points out that we may make differing decisions from our neighbors and relatives, friends and peers at times when it comes to getting tested before, during, and after pregnancy. And it’s okay to make different decisions from one pregnancy or another (I did!).

Bonnie is a deft writer, having written about parenting and health for publications including The New York Times Magazine and The Wall Street Journal. I met her years back when she started to interview me for stories and I built up trust in the work she’s created. She is a former parenting columnist for Time.com and staff writer for Time magazine. The new book, The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids—And the Kids We Have is her most comprehensive look yetBonnie is a mom to 3 and has her own personal story about genetic testing that led her to write this book. It’s a tough subject to cover, fraught with political, religious and philosophical implications yet her tone stays neutral throughout. I pushed her to share learnings from all of this research and writing. A tiny peek at some ideas from the book and a few ideas from Bonnie herself:

Genetic Technologies Are Re-Shaping Parenthood

  • Carrier Screening: Testing that’s done to see whether you or your partner carry a genetic mutation that could cause a serious inherited disorder in your baby. Some of the more common disorders screened for include cystic fibrosis, sickle cell disease, thalassemia, and Tay-Sachs disease, but there are more than 100 others that can be tested for. More and more companies are promoting universal, expanded carrier screening of both parents.
  • Detecting Problems Prenatally: Noninvasive prenatal testing can now detect Down syndrome, the most common chromosomal condition, in the first trimester. These tests can be confusing to some expecting moms and partners and know that the names of the tests vary from clinic to clinic. SO if you’re chatting with a friend about a test know that what terms you’ve heard at one clinic may vary from what she hears. Some providers won’t offer some tests unless the mother is over 35 years of age (risk vs benefit plays a part here). Talk to your OBGYN and/or a genetic counselor about all your options and what they mean. Ask again if you don’t understand. It’s okay to opt-out and it’s okay to opt-in. Let your team (this includes your loved ones and your medical team) help you take your time when you have it.
  • Tests such as chromosomal microarray can find small deletions and duplications.

Sequencing Genomes Even Before Birth?

  • Bonnie reports several university medical centers are conducting research to explore whether it’s a good idea to sequence, or decode, the genome of every baby born in this country. It may be that in upcoming decades all babies will have the opportunity to be sequenced even before they are born. What we do with that information will likely change and change and change again.
  • If entire sequences are done more routinely, more diseases would be detected in our babies, but ethical dilemmas arise with what to do about that. Not just with the information but in terms of how much information to share with the parents. For example, should you tell parents that their infant daughter has a breast cancer mutation years before she’d develop breasts? Research is still unfolding as to what knowing these kinds of risks does to children and their parents. “Are the kids all right? When breast cancer runs in the family.”

Rochman on “How To Choose A Test”

  • It’s important to know what sort of person you are — do you seek out information? Or do you prefer to remain blissfully ignorant? If you are the kind of person who finds lots of information overwhelming, you may not want to take advantage of prenatal tests that can yield results that are uncertain or inconclusive.
  • It’s also important to carefully consider what you would do if you were to find out that your fetus has a problem. If you would continue the pregnancy no matter what, you may not want to have extensive prenatal testing.
  • Research has shown that knowing ahead of time about a diagnosis can help parents prepare emotionally and logistically for the birth of a child with special needs.
  • Feel confident in your choices on genetic testing, even if they may vary from one pregnancy to another.

Recommendations are changing all the time, in February 2017, after Bonnie’s book was published, The American College of Obstetricians and Gynecologists (ACOG) expanded its guidelines on carrier screening to include screening for spinal muscular atrophy (SMA) as well as a complete blood count to assess risk of hemoglobinopathy.

5 Reasons Parents May Consider Opting For Prenatal Testing

Bonnie simplifies things here for those who may want to do a lot of testing:

  • You are an eyes-wide-open kind of person who likes gathering lots of information.
  • You don’t like surprises.
  • You are open to test results changing the course of your prenatal care.
  • You want peace of mind – at any cost.
  • You have a tolerance for risk and uncertainty.

You can learn more about genetic testing and Bonnie’s book by listening to our Seattle Mama Doc podcast. To buy The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids – And the Kids We Have visit www.bonnierochman.com or Amazon.com. You can also read Bonnie’s recent article on Slate.com called What Kind of Baby Do You Want?

 

5 Things That Confirm You’re A Master Parent

After I published my book Mama Doc Medicine, I toyed around with the idea of writing tiny little books inspired by a favorite short story publication, One Story. Literally I was thinking that the way to consume ideas about parenthood was not in book form but in pamphlet-sized publications on parenthood, vaccines, & general tips for feeling awesome while raising children. I haven’t entirely tanked the idea (please weigh in if you think you’d read them!) but it’s not at the top of my to-do list. That being said, I realized after publishing years of blogs and a whole book of stories about my boys and science and parenting and the general overwhelm we all feel, that I could have perhaps just published 5 tips in 5 pamphlets! Sure would have saved time…

Thing is, in my opinion, if you do these 5 things, you’re wildly decreasing the likelihood of death for your child and pretty much preforming at the top 99%, parenthood-wise. All the rest is gravy. As a mom and pediatrician, I think if you do these things well you should feel like a ROCK STAR. The rest of what we all read about is a smattering of parenting “style” advice. There will continue to be books on grit and food selection and poop and sleep forever. And reading up on new ideas and new data can be great ways to bolster our confidence. But really, I’m saying, do these 5 things out of love and with ongoing daily respect for who your child is as an individual, and I think you’ll be a master.

This is the cousin to my recent “5 Things To Stop Worrying About” blog. In my mind, there are 5 non-negotiable pediatric parenting must-dos. If you can make these things a top priority, you’re pretty much nailing it. Congrats. Check this off on your life list as an awesome new start to spring. Listen to the podcast, please but little notes about it are below, too. Love up your children and love up yourself for doing all of this so well!

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Tongue-Tie And Breastfeeding: What To Do For Babies With Tongue-Tie

Image c/o Mayo Clinic

Tongue-tie is a condition in which an unusually short, thick or tight band of tissue (frenulum) tethers the bottom of the tongue’s tip to the floor of the mouth. Often it goes unnoticed and causes no problems in life but rarely it can affect how a child eats and how they sound when they speak, and can sometimes interfere with breastfeeding because baby’s tongue may not have enough range of motion to attach to the breast, suck and swallow effectively. Sometimes tongue-tied babies can’t maintain a latch for long enough to take in a full feeding, and others remain attached to the breast for long periods of time without taking in enough milk. Sometimes babies with tight frenulums make it miserable for mom to feed because of the way they attach and latch. When a newborn has a tight frenulum breastfeeding moms may have nipple pain, mom may hear clicking sound while the baby feeds, or mom may feel it’s inefficient. Sometimes a parent will notice a heart shape to the tip of the tongue as the band of tissue pulls on the tongue where it’s attached.

What to do about tongue-tie can be controversial. Not all pediatricians, Ear, Nose and Throat surgeons, lactation consultants and occupational therapists always agree. However, every baby deserves the chance to be evaluated by both a physician and a board certified lactation consultant if there is concern! Awareness about a newborn’s challenges with breastfeeding increases diagnosis in the newborn period but decisions to clip a tongue-tie come about from a variety of factors. The American Academy of Pediatrics states: “surgery, called frenotomy, should be considered if the tongue-tie appears to restrict tongue movement, such as inability to latch on with breastfeeding. It is a simple, safe, and effective procedure—general anesthesia is not required.” It takes only a few seconds and many pediatricians can perform the clip in their office.

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International Women’s Day: Boys, Listen Up

Happy International Women’s Day!

I’m squarely in mid-life, 42 years old, a mom to two, no longer a “young” doctor or young entrepreneur or young voice. Perhaps because of that, I’m starting to see things differently when it comes to raising boys and girls to support equality.

I’m a feminist. I think that means I don’t want gender/sex to get in the way of any individual. I was raised with a mom and dad who didn’t present a world of possibilities different for me than the one they presented for my brother. At least not that I could see. I’ve been mentored, supported, encouraged, and nurtured as a woman in the workplace, and a mother in my community, by female mentors like my mom and my advisor in college (a professor of psychology who studies gender), current and past colleagues, advisors, employers and co-workers, and dear friends. But more than ever before I’m feeling the profound support I’ve had from men in my life to be an active, striving-for-equal opportunity physician and advocate. In some ways it’s easier for me because I have the fortune to work as a physician in pediatrics, a field of physicians with a majority of women. In fact, 3/4 of the pediatric resident physicians in the US are women. It’s complicated though, so if interest consider reading, “The Good and Bad Statistics On Women In Medicine.”

However, now more than ever,

I’m starting to feel it isn’t my voice that will make things better for equal rights at large as time unfolds, it’s the voice of my boys.

Obviously this isn’t only about women supporting women. My strongest and perhaps most loyal advisors during my medical school education and during my residency training were both men who have helped me see and also helped me strategically carve out ways to get work done while also having children. I’d describe my residency mentor as one of the biggest feminists I’ve ever known. His feminism and support for me persist in my work and life. Exhibit A: I posted a photo in my pink hat on the day of the Women’s March in January and he was the first to comment saying, “I’m with you, Wendy.” He’s 40 years my senior and carries with him an elegant view of different ways to contribute to pediatric health care and also enjoy raising children of my own. Circa 2005, I vividly remember him drawing out, on a napkin, the different kind of career trajectories one could have in pediatrics and public health, describing them in terms of typical gender norms and roles and stating that I could do this — this career and life — any way that fit with my ethos, energy, passion, and tempo. I could adapt a “male” trajectory or a historically “female” one but that all models could work for all people.

Boys and men in my life do show me also how much they include me. Of course, I’ve felt discrimination, too. But this post isn’t about that. It’s about the BIG opportunity of NOW. Read full post »

Perhaps The Most Marvelous Time To Be A Parent

This week I awoke to realize this may be a marvelous time to be a parent. I mean this time, the one where political divisions run rampant, where protests and rallies have become the norm, where known science is questioned, and where we seem to be facing threats to our inequalities and our justice head on.

My boys have their eyes wide open.

Early Thursday morning I flew home from a speaking event in Oregon. I was a little bit exhausted and only had about 15 minutes to swing through my house prior to heading to the hospital for some meetings and an afternoon of podcasting. When I walked into the kitchen I found a little tube waiting for me on the kitchen counter. Our poster had arrived! Thrill coursed through me as I uncurled it and ran to the front yard.

It’s the sign you see here now gracing our front yard. It’s the sign I picked out with my boys a couple weeks ago online after a friend shared the one she’d put up. It’s the one the boys and I selected because of the poetry we felt it held, but also the power that lifted from it. In this house we have no interest in hiding how we feel. The boys have watched the pink hats get knit, the signs being painted, and the work to continue to protect our neighbors, friends, immigrants, and family of the United States that we hold so dear.

And so it was not just the platter of ideas that embody respect, liberty, and truths on this little sign that I got excited about it. It’s my boys own insight that unfolded Thursday — without me — that has me sharing here. Their pledge to the world, too.

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Make A Customized Allergy Emergency Plan For Your Child

Let’s make things easier for children with life-threatening allergies. How we communicate what a child needs matters and can be essential to protect their safety but also reduce stress and anxiety for parents who worry. This week, experts in allergy and immunology at The American Academy of Pediatrics did us a favor and sorted through various allergy emergency plans living online and in doctors’ offices. Through experience with years of research on asthma action plans, the team created a Clinical Report that showcases a single, comprehensive and universal emergency plan to help ensure that parents and caregivers are ready to manage a life-threatening reaction called anaphylaxis. If you have a child or care for a child with food allergies, allergies to insects or a known risk for anaphylaxis, print one out, put it on the fridge and make sure your child’s school has it on file! The goal is to start having all families use the same form so schools, communities, sports teams and parents everywhere all get familiar.

 What Is Anaphylaxis?

  • Anaphylaxis is a potentially life-threatening, severe allergic reaction. I like how Food Allergy Research & Education defines it: “During anaphylaxis, allergic symptoms can affect several areas of the body and may threaten breathing and blood circulation. Food allergy is the most common cause of anaphylaxis, although several other allergens – insect stings, medications, or latex – are other potential triggers”.
  • Typically, children or adults with anaphylaxis have symptoms include itchy skin, hives, shortness of breath, swelling of lips/tongue, or wheezing. Some children vomit soon after eating a food they react to and some children get diarrhea.
  • Epinephrine should be given right away, in the thigh. If you ever feel you might need it, use it. Then call 911.

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5 Things To Stop Worrying About

It’s a hard time to be a human in the United States. We’re all so worried right now as the universe seems to spin every day and the divisions among us seem to project on every wall. Yesterday I escaped the city, the news cycle, and dread by sledding with my boys in the mountains. Those outdoor be-without-a-ceiling interludes help, but the reality is Sunday morning just arrived and the newspaper is sitting on the front porch. To open it?

The hesitancy to even open the newspaper brings me to an essential truth: most of us are doing a wonderful job raising our children and what is in front of us is precious and safe. Most of us have inner critics that knock us down every day and criticize how we’re doing. But most of us can stop worrying about things so much at home. We really can and should chill out and enjoy this.

Looking to shorten your to-do list, maybe sleep better and reduce anxiety? I’ve shared 5 things I think we as parents can STOP worrying about in the latest podcast. It’s just me talking in this one (no experts join) and even so, I like this podcast. In a world where were are inundated with competition, guilt, data, and comparisons, take these ideas and feel better about the (likely) most wonderful job you’re doing raising your children.

Also, you should know I’m recording, “5 Things To Perfect As A Parent” this week as I feel we all need reminders of how much we have already mastered. We have to frame-shift and realize how great things really are while raising children amid these spins and unease. Read full post »

If You Worry Your Child Is Depressed

Depression is far more common in teens than in young children, but I often hear families wondering how to know if they should worry about their child’s mood. As many as 1 in 5 teens can have a depressed episode so concerns about depression are a common challenge. Many of us wonder if young kids get depressed (yes, but not too often), what are the signs (detailed below), and what to do about it (6 tips below). It’s scary for every parent who thinks a child is depressed. It can be terrifying to worry about a teen. There is a certain innocence we reserve for childhood and no question for some, depression can seem antithetic to that. Depression can be very real, influenced by life events, inherited, and wildly disruptive. But there is great research to help guide what we do to support children, teens, and our families if depression becomes a challenge.

I talked with clinical psychologist and depression expert at Seattle Children’s Hospital, Dr. Gretchen Gudmundsen on this 20-minute podcast. I learned a lot as we covered the definitions of depression, which children are at risk for depression, classic depression symptoms, and when parents should seek help for their depressed child.

You can listen to the podcast right here on the blog, or you can listen while you’re commuting on your phone by going to iTunes (search “Seattle Mama Doc”) or Google Play or on Soundcloud. A quick summary of high-level points below:

What Is Depression In Children and Teens:

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New Tobacco Legislation: No Cigs To Those Under 21

Last week I had the distinct pleasure of working with Washington State Secretary of Health, Dr. John Wiesman on spreading the message and intent about Washington House Bill #1054. This bill aims to raise the age to purchase tobacco and vaping products from 18 to 21 years. Dr. Wiesman believes it is the single most important policy the legislature could adopt to protect the health of our kids and the health in Washington State. That’s quite a statement.

The reason for the suggested bill and increase in age for purchasing tobacco (including e-cigs, vapes, traditional cigarettes) is to prevent access to a curious, young, and vulnerable population. Most teens say they try e-cigs and cigarettes out of curiosity. And we know 90% of adult smokers get addicted before they turn into adults. As detailed in this post, Teens Using E-Cigarettes, use of e-cigarettes rose 900% between 2011 and 2015 as they have infiltrated middle and high school students’ environment. Most teens get tobacco and e-cigs from older teens. The Surgeon General even published a big report because of concerns for increasing addiction and use of tobacco products in children and teens and what it means for our country’s risks and our country’s health.

  • In Washington, 75% of 10th graders who used cigarettes in the past 30 days received them through social sources, especially older friends.
  • About 95% of adult tobacco users started using before they turned 21 years of age.
  • As I understand it, this proposed legislation isn’t about being a “nanny” state, it’s about the welfare and health of our teens into adulthood. It’s about access to tobacco products for our most vulnerable. The brain continues to develop until age 25 years and nicotine gets in the way.

Also, the money matters. Each year, smoking-related illness costs Washingtonians $2.8 billion (Billion with a B) equating to more than $800 per household in taxes. This affects us all –$800 annually — per household goes to taxes to help deal with the effects of smoking! I think we could think of  a lot better ways to spend tax payer dollars. Read full post »

Teens Using E-Cigarettes Up 900%

We know more about e-cigarettes and teens than ever before. Recently, Dr. Vivek Murthy, US Surgeon General released a report on teens and young adults who use e-cigarettes. Perhaps one of the more staggering statistics in the report states that e-cig use has increased 900% in high school students from 2011-2015. That’s a jump. Especially concerning right on the heels of progressive data that teens were smoking less traditional cigarettes than ever before.

E-cigarettes are devices that create an aerosol (vapor) by using a battery to heat up liquid that usually contains nicotine, flavorings, and other additives. There are more chemicals in the solution than just nicotine and some contain heavy metals. Teens inhale this aerosol deep into their lungs where the nicotine and chemicals enters the blood stream. E-cigarettes can also be used to deliver other drugs like marijuana.

Reality is, the introduction of e-cigs has changed teen exposure to nicotine in a remarkable way, remarkably quickly. Nearly 1 in 5 high school students here in WA reports they have used an e-cigarette in the last month. E-cigs and e-hookahs originally entered the market unrestricted. Advertisements and celebrity endorsements arrived rapidly. And the price point of e-cigarettes kept them in reach for curious teens, as the price falls research finds, experimentation increases. Adoption of e-cigs came quickly extending down to middle school students.

These products are now the most commonly used form of tobacco among youth in the United States, surpassing conventional tobacco products, including cigarettes, cigars, chewing tobacco and hookahs. I think most people think your brain stops developing when you’re 5 or something, and certainly there’s a huge amount of development in the first couple of years in life, but we know that adolescent brains are actually very significant in development, and nicotine is a neurotoxin, and we know that it can cause lifelong problems for kids, including mental health problems, behavioral problems and actual changes in brain structure.” ~Dr. Vivek Murthy, US Surgeon General

Teens report using e-cigs primarily because of curiosity but also the fallacy that they don’t carry health risks.

Highlights From US Surgeon General Report On E-Cigs:

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