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jessica2011 Message
3 Sep 2011, 09:04 PM

Hi My daughter Jessica was born feb 04 2011 and we found out on the 5th that she had Pierre Robin Sequence & Hypotonia. It was such a shock as I had never heard of it before. Since then I have done quite a lot of research and I am thankful that Jessica's microgranthia is very mild and she really hasn't had too many problems because of this. She also has a terminal deletion on her No4 Chromosome and we just have to wait and see what will transpire for her future. We are waiting to see the Plastic Surgeon again to see when he will operate on her cleft palate. She came home feeding with the Haberman and a Nasal Gastric Feeding Tube but she has now been without this for about a month. She was not piling on the weight previously and now she is only putting on very small amounts of weight but she is so much happier without the tube. We are feeding solids now and she is slowly getting used to & learning how to cope with them. It can be quite scary at times. I am looking to reach out to others who are going through similar experiences as I am.
Maillady68 Message
13 Mar 2015, 03:39 PM

Hi, I have a teenage son that also was born with Pierre Robin. I'm sure a lot has changed with your daughter since you wrote this post. But I can share our experience and would be interested to hear how your daughter is coming along.
Just Annie Message
3 Oct 2018, 02:48 PM

Long time since the 2 previous posts.  I wonder how Jessica and  Mailady68's son are doing?   My daughter was born in 1971 with Pierre Robin Syndrome and trisomi 22 (11q22q translocation).   She is very severely disabled both physically and mentally.  I looked after her at home till she was 24, she is now in a wonderful Care Home,  I see her often.  We live in England.  I am happy to answer any questions.