What is Pierre Robin Sequence?

That’s a great question and up until a month ago I had never heard of it before either.

A sequence is not the same as a syndrome although it sounds just as scary. All it means is that a child has an underdeveloped jaw, recessed chin and cleft palate. It’s so much easier just to say my son has Pierre Robin Sequence as opposed to having to say everything it entails. I’d like to tell you a little about my son Joshua in case there are other moms and dads looking for information from someone who is going through this right now.

It was a cold and dark stormy night….just kidding.

My pregnancy with Joshua was going extremely well , which is strange for me since he was my third pregnancy and the first two, well…that is for another blog post. At my growth scan at 32 weeks his percentile dropped from 46th down to the 12th. My MFM (high risk OB) gave me instructions to see him weekly for ultrasounds and to see my OB weekly as well for non stress tests. Joshua kept looking great on all his tests and was actually starting to grow slightly. Everything was looking great until around 36 weeks when my blood pressure started spiking into the hypertension range. I had an appointment just a few days over 37 weeks at my MFM office and gave him my pressure readings from the prior week. He said, “Well, you’re 37 weeks. Do you want to have a baby today?” and that was that. I headed down the hall to Labor & Delivery, called my husband frantically yelling “I’M HAVING THE BABY TODAY!!!” and a few hours later via repeat csection Joshua was born.

When the neonatologist looked him over, all 4lbs 15oz of him, she realized that he had a completely cleft palate. He was having some difficulty breathing in the OR so he was taken up to NICU immediately. From there began our journey.

It was two full days before I could hold Joshua since his heart rate and oxygen levels were too erratic and he wasn’t stable enough to be moved. He was on an ng tube for feeding, cannula for oxygen, and all sorts of wires were hooked up to him. The third day the neonatologist called me to discuss his situation and that’s when I first heard the words Pierre Robin Sequence.

Joshua had a couple things to deal with. Not just having Pierre Robin but also the fact that he was born three weeks early and was underweight for his age. It was quickly discovered that he could not lay flat on his back or else his tongue would flop backwards and block his airway since it had nowhere else to go. He had to lay on his belly or on his side to keep him from choking and to keep his oxygen levels up. Not only the issue with the tongue but it was clear he was having premature apnea episodes where he would just completely forget to breathe. Both my husband and myself were witness to a few episodes of one or the other and let me tell you…it was frightening.

Eventually he was weaned off the oxygen and was able to be held. He spent 23 days in the NICU but finally was able to come home last week. We brought him home with a feeding tube and an apnea monitor that will monitor for oxygen desaturation since we’re without the hospital’s close supervision now.

We have a few appointments coming up with different cleft palate teams in the Chicagoland area but it is the general consensus that cleft palate repairs are done around 10 months old. Hopefully we can be done with the feeding tube and apnea monitor soon as it’s not the easiest to take him anywhere being hooked up to monitors and wires all day long.

I’ll write more about our experience as we go for anyone interested in following along. I also have a 4.5 year old son Thomas with autism so there will be plenty to say about him in the near future as well!

Thanks for reading!

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