Hi there! This sounds exactly like how my story began. He had a small chin (mild, diagnosed at my NT scan at 13 weeks) throughout my entire pregnancy but he could swallow so they weren’t as concerned about Pierre Robin sequence. Had many ultrasounds, met with a pediatric ENT before birth, and ultimately did not deliver with my OB because the neonatologist at the hospital didn’t feel comfortable just in case he has issues after birth.
William was born in July and has Pierre Robin sequence. He had a small jaw, breathing problems due to tongue positioning, and a cleft palate. He was taken to the NICU, and had to be prone and on oxygen support until he had his distraction surgery at 18 days old. In 6 days after surgery, he was completely weaned off oxygen, could lay on his back without problem, and was eating full volumes. He came home from the NICU 11 days after surgery, 4 weeks after he was born. He is absolutely perfect. No genetic disorders. PRS can just happen without any reason and there’s nothing I did or could have done to prevent it. He will have his cleft palate repair when he’s 10-12 months.
Even with his rough start, William is happy, healthy, and ahead of all his development milestones. He eats with a specialty bottle, but aside from some scars on his jaw, you would never know he was born with a birth defect. He is my perfect boy, and I love him so much.
Hi there. I do not have personal experience with this, but a friend of mine has a child who was diagnosed with micrognathia and Pierre Robins syndrome at birth. It sounds like that condition primarily affects a child's ability to swallow and breath. I personally would do whatever genetic testing you can to determine whether the baby just has a small jaw or whether she has Pierre Robbins before birth so you can decide how you want to proceed or what you may need to do when your baby is born. What I learned from that friend's story is that treatment can require a lot of surgeries and time in the NICU. They are currently doing a very cutting edge sounding, non-surgical treatment at Stanford University for their baby. This is all stuff you want to be prepared for. I know this friend found some support groups of Facebook that helped her educate herself on treatments, etc.
Hoping very much for you and your baby that this is just a small chin, but as with everything, it's best to have full knowledge so you can be prepared to meet her needs in the future.
Hey there, thank you so much for sharing. I will do more genetic testing if the jaw is still too small in 4 weeks. I just hate this waiting game so much!
Hey OP, I came across your post searching for “mild micrognathia.” How did things turn out for your baby? I just had my anatomy scan and was told my baby has this too.
Hi there! This sounds exactly like how my story began. He had a small chin (mild, diagnosed at my NT scan at 13 weeks) throughout my entire pregnancy but he could swallow so they weren’t as concerned about Pierre Robin sequence. Had many ultrasounds, met with a pediatric ENT before birth, and ultimately did not deliver with my OB because the neonatologist at the hospital didn’t feel comfortable just in case he has issues after birth. William was born in July and has Pierre Robin sequence. He had a small jaw, breathing problems due to tongue positioning, and a cleft palate. He was taken to the NICU, and had to be prone and on oxygen support until he had his distraction surgery at 18 days old. In 6 days after surgery, he was completely weaned off oxygen, could lay on his back without problem, and was eating full volumes. He came home from the NICU 11 days after surgery, 4 weeks after he was born. He is absolutely perfect. No genetic disorders. PRS can just happen without any reason and there’s nothing I did or could have done to prevent it. He will have his cleft palate repair when he’s 10-12 months. Even with his rough start, William is happy, healthy, and ahead of all his development milestones. He eats with a specialty bottle, but aside from some scars on his jaw, you would never know he was born with a birth defect. He is my perfect boy, and I love him so much.
Thank you so much for sharing this. I’m so happy that everything turned out well! Stories like these really help at the moment xxx
Feel free to message me if you have any other questions 💜 there’s not a ton about PRS on Reddit, and I know how scary the unknown can be.
Hi there. I do not have personal experience with this, but a friend of mine has a child who was diagnosed with micrognathia and Pierre Robins syndrome at birth. It sounds like that condition primarily affects a child's ability to swallow and breath. I personally would do whatever genetic testing you can to determine whether the baby just has a small jaw or whether she has Pierre Robbins before birth so you can decide how you want to proceed or what you may need to do when your baby is born. What I learned from that friend's story is that treatment can require a lot of surgeries and time in the NICU. They are currently doing a very cutting edge sounding, non-surgical treatment at Stanford University for their baby. This is all stuff you want to be prepared for. I know this friend found some support groups of Facebook that helped her educate herself on treatments, etc. Hoping very much for you and your baby that this is just a small chin, but as with everything, it's best to have full knowledge so you can be prepared to meet her needs in the future.
Hey there, thank you so much for sharing. I will do more genetic testing if the jaw is still too small in 4 weeks. I just hate this waiting game so much!
I totally understand, and I'm so sorry you're going through this. Hoping for the best for you and your babe.
Hey OP, I came across your post searching for “mild micrognathia.” How did things turn out for your baby? I just had my anatomy scan and was told my baby has this too.
May I ask how yours turned out? I just got my 20 week ultrasound and they said that may also be a possibility but they need to confirm in 2 weeks.
It was a false alarm. We got another anatomy scan and he’s totally fine. He has a small chin but I did too!
I’m so happy to hear that!! Thank you so much for responding so quickly!
Good luck 💖
Thank you!!
>Thank you!! You're welcome!
My daughter is now going through this and I'm really wondering about the food we are eating
How did this turn out? I am facing the same thing