My kids were born with obstructive sleep apnea

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Before I was a childbirth educator, I was a mom of a little girl. I’ve written about her birth before; I haven’t really ever thought to talk about how both of my kids were born with sleep apnea, and how it took forever to find a pediatrician who would actually believe me.

When I first brought her home from the hospital, I noticed almost immediately that my baby girl would regularly stop breathing for a couple of seconds, only to gasp for air. Initially, my new mama instinct wasn’t sure if I was just being overly paranoid, or if she really did stop breathing for a couple of seconds before the big gasps I didn’t think were normal. Her Mayo Clinic doctor (who was a total and complete ass, BTW), ignored my concerns– he told me she was just congested, and moved on to something else.

(As an aside, I should tell you some day about the nonsense “parenting education” material they would give me every visit. Knowing what I know now, there was very little actual evidence behind it. All it did was foster doubt an insecurity by creating parenting expectations that would never be biologically normal. Even better, if I could find the sheets, it’d be a total hoot to go through it with a big red marker!)

When my daughter was about 4 weeks old, after sleepless nights and too many days nodding off during the day while I fed her on the couch, a friend encouraged me to look into safe bedsharing. I found the safety guidelines online, and during one nap time, I latched her on while in the side-lying position in my bed, and we both fell asleep for a life-changing 2 hours. I was a convert from then on out. It wasn’t until much later that I realized that since she and I started sharing a safe sleep surface, I no longer noticed that she would stop breathing. Instead of sleeping next to me in her bassinet on her back (which, until very recently, was the only AAP-sanctioned sleep scenario), she spent her nights cuddled up next to me, on her side. Sometimes I’d wake up and find out that I’d been feeding her without remembering when or how the feeding started. And then, when she was 9 months old or so, she started to turn sideways in the middle of the night and stretch out as much as she possibly could. That’s when we transitioned her to a crib in her own room. And at 9 months, she would sleep in whatever position she felt like sleeping in that night. By that point, she was not only rolling and crawling, but walking on her own, too. SIDS and back-to-sleep stuff was no longer technically an issue for her.

However– she was back having very, very audible sleep apnea. We’d listen to what I now understand was the sound made when her tongue would fall into the back of her mouth, then the little “kuh” sound she’d make right before the gasp as she started breathing again. We’d joke in a moribund manner that the gasp at least told us she was breathing…eventually. Moreover, we’d started to notice that when she slept, she always slept on her stomach or he side with her head tilted back to straighten and open her airway.

When she was 2 years old–maybe?– we brought it up again with her doctor. Keep in mind, smart phones weren’t a thing yet. iPods were big and bulky and only had hard drives and were only for music. We could really only convey what we were noticing by trying to recreate it ourselves. Her family med doc was again dismissive, though he did say he could refer us for a pediatric sleep study, but that it would take 6 months before we’d be able to get in. Shortly after that, our basement flooded, my husband got a new job that required him to commute 90 minutes each way, and then I got pregnant with her little brother… and life got super chaotic.

Once my son was born, bedsharing was started from day 1. However, he didn’t really nap on his own until he was about 8 months old, and when he did, he’d do what his sister did– he’d stop breathing. As he neared the 9 month mark, when I would put them both down for a nap in the same room, I’d listen to the baby monitor as they took turns having apnea episodes (which I’m sure did NOT help my anxiety). I can’t remember if it was at a well baby visit for him or a well child visit for her, but I mentioned the apnea episodes their pediatrician, who referred us to a pediatric ENT. She got her tonsils out shortly after her 4th birthday. At that point, they had grown so large that she barely had any room to breathe while she slept. A few days after the tonsillectomy, we noticed that when she slept–there was silence.

My son had his tonsils and adenoid out when he was 3 years old. He was also able to breathe perfectly while sleeping a couple days after surgery.

So there you go. My kids had obstructive sleep apnea, and now they don’t. I do think that both of them had and have tongue ties for a BUNCH of reasons. I had recurrent mastitis, nursing was super painful at first with my daughter, she didn’t gain weight all that fast, both kids had EPIC spit-ups. One child had speech issues that have been resolved. The other one tongue-thrusts to swallow and is very sensitive to food texture.I often wonder if I had had them sleeping on their own in a room from day 1, on their backs and not near me–would we have had a different outcome? We know (and the AAP recognizes this) that babies NEED to sleep in close range to their parents for at least the first 9 months, in part to help them regulate their breathing. When humans sleep on their backs, the tongue can fall to the back of the mouth, causing snoring and apnea.

Finally, I do want parents to know that if your little one stops breathing and then gasps for air, that is NOT NORMAL. If they sleep with their head always tilted back—again, not normal. Listen to your gut, and if your child’s care provider dismisses you–get a second opinion. Or a third. I know that there’s so much more to learn about this, SIDS, and other sleep issues, but I do think that parents can go a long way if we share our stories and compare notes.

On that note, Happy New Year!

Warmly,

Veronica

 

Veronica Jacobsen, BA, CD(DONA), CLC, CPST, LCCE, FACCE

DONA-Certified 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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