When the parent knows more than the physician

parent versus physician

Two articles that I’ve read In the last 3 days have compelled me to share something here on the blog. The first was a story in this month’s The Atlantic that talked about the amount of burnout that physicians face, largely due to the insane demands of charting and other administrative functions. The other was a story from The New York Times about how parents can sometimes do so much research that they know more about their kids’ health conditions than the doctors who end up treating them, largely because the parents have made time for the research that the already-frazzled physicians don’t have.

I’ve told my story before about my daughter’s birth, and I detailed her lip tie release last year. (Oh, and by the way, her front two teeth no longer have a gap. Take that, lip tie deniers.) There’s another story, though, that had way more of an impact on me as a mother and as an educator. It’s the story of my daughter’s obstructive sleep apnea.

I get that all new moms are anxious when it comes to their baby’s sleep. I mean, we do talk about SIDS quite a lot, so there is naturally going to be some worry about making sleep safe. But, in those first few days at home, in the middle of the night, I was disturbed to realize: my daughter would stop breathing while asleep for 3-4 seconds at a time, and then start breathing again with a small gasp. At first I thought it was my imagination, but the hours I spent sleeping with my hand on her while she was asleep in her bassinet next to me did eventually convince me there was a problem that I wasn’t making up.

I shouldn’t tell you this, but things were a little better when I finally threw in the towel and put my daughter to sleep on her side instead of the officially approved back position. When on her side, she was able to flex her neck, and she would tilt back her neck far enough to open and straighten her airway while she slept. She would continue to sleep in that position, neck bent and mouth open, for the entire first four years of her life.

When I finally ventured out of the house with my 4 week old daughter to have lunch with a friend, it was my very, very exhausted self who had been holding her upright for every nap that was gently counseled to try cosleeping. “Just try it for a nap,” she suggested. That afternoon, after looking up all of the safety guidelines, I did, in fact, try cosleeping for the first time. It was a life-changing revelation. From that nap forward, my daughter did co sleep with me until she was 9 months old.

The researchers who do study safe sleep have found that when breastfeeding mothers and babies sleep close together, either in the same bed (again, following the established safety guidelines) or in a crib or bassinet within arms reach of moms, there is a synchronization of sleep patterns that is believed to be important for newborns who aren’t very good at regulating their breathing during sleep on their own. Furthermore, as researcher Kathleen Kendall Tackett once told a plenary session at a conference in Boston that I was attending, for babies with obstructive sleep apnea, co sleeping and bed sharing can be critically important for helping those babies keep breathing.

Now, my story isn’t as much about co sleeping as what happened when I tried to get help for my daughter. At one of her very first well baby checks, I mentioned to her doctor that she would stop breathing when she was asleep. As a new mom, he dismissed any of my claims. As she grew and started to take naps on her own, my husband and I got used to listening to her regular gasps for air over the baby monitor. In a messed up way, those gasps were reassuring: they told us she was still breathing, just not correctly.

Later on, after doing some more research and after it was abundantly clear that she would always have short periods of apnea while sleeping, I did broach the subject again with her doctor. He finally listened and said a sleep study should be done, but the wait list was months long. Shortly after that, our lives spun into chaos: our basement was destroyed during a very heavy rainstorm, requiring us to gut the entire thing and start over from scratch, my husband, sensing an impending layoff, got a job in downtown Minneapolis and had a 12 hour workday and commute, and I became pregnant with my son. (Looking back, it was probably inevitable that I’d end up with postpartum anxiety.)

Tomorrow: The advocacy journey continues

Veronica Jacobsen, BA, CLC, CPST, LCCE, FACCE
Birth Doula, Certified Lactation Counselor, Child Passenger Safety Technician, Lamaze Certified Childbirth Educator, Fellow of the Academy of Certified Childbirth Educators

Opening BabyLove in September of 2011 has allowed me to build a space where all families can come to get good information in a caring, welcoming environment. I have found that not only do I love teaching more than ever, but I also really love running a business. Hopefully my passion for every aspect of BabyLove shines through.
I live in Richfield with my husband, and I am a mother of a two great children. When I can steal a few free moments, I love to go on adventures with my family, cook, garden, thrift, can, and craft.

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