Hi there- my daughter Mia was born on May 31st of this year with a total cleft of the hard and soft palate. It's unclear to me whether she has Pierre Robin sequence - the doctor's mention it but no one has come out and said she has it. She has a small recessed chin and because of it, has difficulty breathing. It's overwhelming for me but its getting easier with each passing week. She has her complete jaw/gums in place and no cleft lip issues.
I feel so confused about all of this. I don't think mia's pediatrician ever had a cleft palate patient- he really doesn't provide too much info. I just want to know what I can expect in the future- is she going to have speech problems, hearing problems, dental problems? anything else? what are the types of issues kids with cleft palates may face? I feel totally in the dark and that I am just relying on doctors who aren't telling me anything. No one has explained to me what may happen in the future- does anyone out there know?
Also, I feel so much stress to pick the right PS. We met with two- one that has an excellent reputation, does these surgeries all the time and volunteers to do them out of the country, who is not connected with a "team", and one who has the same reputation and experience who is with a team. Both seemed okay although I wasn't too impressed with the rest of the team members for the one PS. How do you pick- I feel like if I pick wrong my daughter will pay the price and it will be all my fault. I live in the Schenectady/Albany, NY area and the two that I am referring to are Dr. Noonan and Dr. Patricia Fox. Like I said, both seemed great- the hospital where I delivered and Mia's pediatrician recommended Dr. Fox, my doctor and others recommended Dr. Noonan. I can't get an accurate "gut feeling" because I'm so worried that I'll choose the wrong one. Any advice?
This has been a long message. I appreciate it very much to anyone that read through the whole thing. Thanks, Sandy