# Pierre Robin Sequence, Syndrome, birth defects, cleft palate... My story



## Leinzlove

I thought I'd put my story here. In case anyone searches. As there isn't a whole lot of imformation about it. It is rare.

Pierre Robin Sequence, It's devastating, not what you expect and its very hard to come to terms with.

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 September. 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 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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## AimeeM

Thanks for sharing, glad things are moving forward for your little lady xx


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## TaNasha

Thanks for sharing!

My little girl has a cleft lip and palate, so I have a tiny idea of what you are going through xxxxx


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## Leinzlove

Thoughts and prayers are with you! The palate repair wasn't bad. DD is now saying MA Ma and num num. :)


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## Shezza84uk

Very encouraging she is surely a fighter and you and you husband should be congratulated on your strength and courage throughout her struggle it's very inspiring she is an absolute blessing wishing her continued progress and good health xxx


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## CalifMom

Congratulations on your Beautiful Baby!
I understand your story because my daughter was also born with a cleft Palate with Pierre Robin Sequence. My daughter is now 15 years old and she is doing great! I would be happy to share our journey with you if you need any advice from a Mom who understands.


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## Leinzlove

Thanks hun! Did your daughter have to work on speech? Also what other things came along because of the PRS over the years?


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## MadredeDos

thank you for sharing your story. i had a son born with prs 8 months ago. it was an isolated case too.. no links to syndromes. i started a blog about him. which i can't share because i need 10 posts before i do so...what the heck is this about?? lol how can i contact you as I would love to know how your daughter is doing. and ask questions regarding this journey. :)


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## Leinzlove

https://www.facebook.com/#!/PierreRobinAngel I hope this is the link to my daughter's page on FB.

I'm willing to talk or answer any questions or just whatever. :hugs: You can also send me a private message here on this site.


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## Leinzlove

https://i1264.photobucket.com/albums/jj483/leinzlove/2013-02-12_zps7c03eff9.jpg


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## x Michelle x

Wow, she is just gorgeous! how is she doing now hun?


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## RachA

Your daughter is just gorgeous. What a hard time you've had of it. Thank you for sharing :)


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## Leinzlove

She is doing great! :) She has issues gaining weight and is on 3 pediasures a day. We see the craniofacial team for follow ups a few times a year. And then she sees the speech therapist twice a month!


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## baileybubs

Wow I had no idea of this story and what you all went through, thanks for sharing it Leinz, and she really is an amazing little girl xx


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## TTCSept 12

I know this is an old post, but I came across it when I have been researching. First of all congratulations and secondly a huge well done, you must be so proud of yourselves and your daughter for being so strong. I had a little girl two days ago my emergency c-section, she also has Pierre Robin Syndrome, she is still currently up on ICU and has two tubes, one for feeding and one to help her breathing. The tube for her breathing was inserted yesterday and allows her to sleep on her back without a single bit of distress and also keeps her airways open. Her bottom jaw is very far back so feeding by bottle wasnt an option because as soon as she was on her back her tongue would roll back. The specialist from the CLAPA organisation are due to try feeding her monday with a bottle for the first time. I understand how shocking it is to find out and have them taken so quick. I saw Ebony for 5 minutes before she was gone. Again, like yourselves, no links to anything just pot luck! Its so reassuring for parents like myself to see how fantastic the results of hard work can be. I wouldnt change my daughter for the world and im ready to tackle with her any obstacles that we are faced with, again another huge and much deserved well done! X


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## Leinzlove

Ask anything you want. There is support. It's a hard first year... but they thrive and it gets so much easier. I had tears a plenty though, and that's okay. You need not worry, PRS babies are stronger than their parents. In fact my PRS baby is 2 and you would hardly know that she was born with it. She is behind in speech, but making improvements every day.

I have a page on FB with my daughters ongoing story. www.facebook.com/pierrerobinangel. I'm also a member of the Pierre Robin Foundation. You can see stories of PRS journeys etc. There are some adults that can tell you what its like living with PRS. There is all kinds of support.

Congratulations on your new baby! Lots of hugs and thoughts!


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