I have two children who were born with cleft palate and we found
out much later that it was due to Sticklers. In 2000 my youngest
daughter had genetic testing that proved that Sticklers was what
caused the cleft palate and she had son who has Pierre Robin syndrome
who also had cleft palate. When my daughter was 2 months old the
doctors told me she was deaf and they also thought that she was
blind. She had surgery when she was 10 months old that was able to
restor her hearing and she has worn glasses from the time she was 6
months old. My second child that had it is her brother who is 18
months older he is now legally blind when he was younger he had lazy
eye and no one noticed it or diagnosid it and when it was finally
noticed it was too late to do anything. Then when he was 20 his
retina detached in his good eye and he had 2 surgeries to try to
reattach it but it did not work. So now he is legally blind. They
both are double jointed both have vision problems. My daughter is now
31 and my son is 32. My grandson is 8 and he has had tubes in his
ears 2 times now and is currently undergoing speech therapy to help
with his speech. He has only had one surgery. My daughter (his mom)
had to have 4 surgeries. I would like to be able to encourage
parents who are feeling over whelmed.
Thank-you. I am a RN and have a interest in helping others who
are dealing with these types of problems.
Debra