# Pierre robins syndrome or sequence



## Blue12

My brother nd his wife just had a baby 2 days ago and she has a small chin and a cleft palate (not lip) and her tongue is at risk of falling back in her throat and choking her. They should be hearing from drs today but everything I have found on google suggests this syndrome. 

Does anyone have any knowledge or experience with this?

Thank you!


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## Peanut78

Sorry, no experience with that, but sending you :hugs:


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## danimarie

Hi, my daughter has a small chin/jaw (microganathia) and has feeding and breathing problems, she was in neonatal for 4 weeks and came home but her breathing was always an issue and on the 14th of november she had to have a tracheostomey, (it felt like the end of the world but we have got so used to it and she is so happy) we were told by her nurse she looked like pierre robin but as she didnt have a cleft pallet they wouldnt reffer her to them, but they said that she still could have it even though she dosent have that, i send all my love as i know exactly what they are going through and if they need to private message me im here and can give you my number as i know its not a common thing to hear about xxxx


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## danimarie

my amazing little princess
https://i258.photobucket.com/albums/hh275/lewisharry/ronni.jpg


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## Blue12

She is soooooooooo beautiful. They are still in hospital and are first on a list to go to the best children's hospital. I will pass on your name to pm you if you don't mind. Thank you so much. Xoxoxo


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## Blue12

How old is your princess now? She is so happy!


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## danimarie

hi, that is fine xxx and she is nearly 9 months now, i know things seem awful at first but one they get used to it its like nothing is different xxxxxxxxx


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## Leinzlove

Just wanted to check in to see how your niece is doing?


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## Blue12

Thanks so much. She is still in hospital waiting to be transferred. She still has the feeding tube and recently had a tube down her throat to help her breath although not sure for how long. She is so beautiful but my brother and sis in law are not talking too much about it yet. She is one month old today. 

How is your cutie doing ? What new and exciting things is she doing?


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## Leinzlove

Your nieces situation is different than mine. But, I wish the outcome to be the same. As Chloe is doing very well. I do understand how your brother and SIL feel. It's devastating, not what you expect and its very hard to come to terms with.

I don't know what you've read about my story. But, Chloe was born on April 25, 2011. I had an uncomplicated pregnancy until 34 weeks when I developed high blood pressure. I had NST every other day and went in for an induction on Easter. I was 39w2d.

She was born with pierre robin sequence. Small lower jaw, cleft palate, tongue in the back of her throat. And she was small for gestational age. Weighed 6lbs 3 oz, 21 in. long.

We had no idea Chloe was special until the pediatrian looked at her. Chloe breathed fine but couldn't be fed with a bottle. I delivered in a hospital without a NICU and she was flighted out. I was devastated, my first baby and just hours after birth, I had to wave good bye as she left me in a isolete. It was to soon for us to be parted. I cried and cried and slept hardly at all. People kept showing up at the hospital to see Chloe, and she wasn't there. I sent DH to be with her, and that made me feel better. The nurses tried to cheer me up. But, I thought my world had ended. It felt that bad.

My OB let me out the next day, and I went straight to the NICU. She was in an isolete on a feeding tube in her nose. And wires everywhere. I'd never seen a baby like that. So, it was very alarming. I held her and rocked her non stop. Never wanted to leave. But, we stayed at the hospital. Dh had taken off 3 weeks for her birth. So, they ran countless tests and asked non stop questions. They mentioned Sticklers Syndrome and a really bad one. They checked her heart. We met with craniofacial, genetics... You name it. 

And we worked with them much of the first year. They haven't found any genetic links or hereditary. So, it looks just like freak of nature. Our odds of another child with PRS is increased 3-5%. So, thats the least of our worries.

We learned how to feed her with Mead Johnson Cleft palate nurser. But, they sent her home sleeping on her back 5 days later. We were so pleased. We scheduled lots of follow ups. Etc. And had weekly weight checks.

In June we went to the Craniofacial follow up. Where I showed the surgeon her recessive breathing. Her tongue was blocking off her airway. We are so lucky she never stopped breathing, those nights we put her to sleep on her back. Now I know that you never put a PRS baby to bed on the back. The risk is higher than those of SIDS. We were informed that she needed Jaw distraction surgery. It was awful, I thought she was doing so well. And here she was failing to thrive. So, just days later she had major surgery. She was intubated for 5 days in the PICU. It was so scary seeing her like that. They had a hard time getting the breathing tube in so, it had to be removed in the operating room. It happened to be my birthday. I was so scared. But, it all went fine, and she returned home 2 days later. She put on weight really fast, then. And for the first time ever my daughter had no trouble breathing.

We turned the pins behind her ears every day. And the distractors were finally out in Septemeber. She also had ear tubes placed. Because with a cleft palate, fluid gets trapped in the middle ear. We were told it was outpatient, but Chloe was in so much pain. They kept her overnight to monitor her while on morphine.

Then 3 weeks ago, she had her cleft palate repair. That was a lot easier than the jaw distraction. They told us it was a 3-5 day hospital stay, but they sent her home the next day. She was on liquid diet for 1 week, then 2 weeks later (today) resumed all normal feeding. I bottle broke her at 9 months with the avent magic cup. And she now feeds herself.

She meets with Occupational therapist, and speech therapist once a month. The first 6 months of her life was the hardest. And now that we are approaching her first year, it has gotten so much easier.

Developmentally she is on target or advanced. Speech is normal, physically ahead, and mentally advanced. They say I'm having the terrible 2s early! She climbs stairs, gets off furniture, says num-num and Ma Ma, feeds herself, takes off her pants and diaper. She unzips pockets and gets what she wants. She goes for something, you move her, she acts like she's interested, you turn your head and she goes right back after it!


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## Chelmpete

my son will be five months old and this story sounds similar to ours. he has a small jaw and his tongue would fall back and block off his airway. he would have dozens of desats everyday. we where trasfered to the best childrens hospital in the country and we where told our options where either a trache or a jaw distraction. we had settled on the jaw distraction. we where getting everything in order for him to have sugary when a plastic surgeon came to look at him and suggested a tongue-lip adhesion. he generally does them on babies with a cleft lip or pallet and he said he didnt know how likely it would be to work but the risk was much less then a jaw distraction and thought we should try it. at three months old he had the sugary and you know what it worked. the sugary was succesful in pulling his tongue forward just enough that it couldnt fall back and block his airway. when he is awake is doesnt desat and hes perfectly fine you can barley tell that its even sewn to his lip unless you are really looking in his mouth for it. he eats from a bottle like every other baby. he still has a floppy windpipe so when hes sleeping he wears a CPAP mask but he is really doing great. i was so thankful for this option. much less invasive that anything else we where faceing


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## Leinzlove

My DD is now 13 months old... you wouldn't know she was born with PRS. Jaw distraction at 2 months, Removal of distractors and ear tubes at 5 months, and palate repair at 10 months.


Spoiler
[IMG]https://i1264.photobucket.com/albums/jj483/leinzlove/484188_3958544043531_1278170350_3629986_1375182843_n.jpg[/IMG]


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## Leinzlove

Any update, hun? We have a support group on FB to raise awareness. Anyone interested? Please... message me. :)


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## Blue12

Thanks Hun. My niece is doing really well. They never did anything about the chin/jaw as drs said it would catch up on its own and its happening. She has her palate repair at 14 months and it went amazing. She is now 17 months. She still sleeps with a wedge but had a sleep study to check her breathing and it went well. At 5 months due to feeding issues and severe reflux she had a button and gtube put in and that is still her only means of food. I think she is going to start some feeding therapy though. My SIL is just not open to support groups I causally mentioned it a number if times. I think it's more real that way. She did however meet a few parents with children with the same issue while she was in the hospital. She was in for 5 months. 


Thanks so much for asking. How is your little one doing?!?! Xxxxxxxxx


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## Leinzlove

My LO is perfect! Just speech therapy! :)


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