Cleft Lip / Palate Support Group
Cleft is a congenital deformity caused by a failure in facial development during gestation. It can be treated with surgery shortly after birth with highly successful results. Cleft occurs in somewhere between one in 600 and one in 800 births. Cleft occurs in several severities and is divided in two major categories: cleft lip and cleft palate.
Hi I am Julie My daughter is 12 and this is a bit of our long story! My father in law was born with a Bilateral Cleft lip and palate. I did not know this when I became pregnant with my first child. She was born with no issues. When I became pregnant with my second child I did not think twice. until my test came back with indicators that there was and issue. But with the untrasound it showed that there was nothing wrong. So I thought everything was fine. At 4 she had surgery to remove her tonsils after having her nose broken. But this did not fix the issue because she broke her nose again and the ENT sent her out for further testing when I told him about her grandpa. That is when it was found that she had incomplete cleft palate. But nothing was to be done til she was older she was 6 at the time. She has since been DX'd with ADHD, ASD, Bladder disorder among other issues. She feels like her life is spent is Dr. Offices. So Monday they told her Surgery was to be done. She is supposed to be in All COnty Band and Start College this summer but it looks as if this is all on hold! She plays the OBOE! The Hole is 6 cm and will get larger and cause more issues. She is fighting this surgery!
How do I convince her that it is what she needs to do promptly and get it over with and then she can go on with her studies after the surgery?
With the Autism Spectrum Disorder it makes this all the more difficult! Not sure how to handle all of this. I knew she had this but we thought she could wait til she was atleast 15 or that was the origional prognosis.
Julie mom of Boo
How do I convince her that it is what she needs to do promptly and get it over with and then she can go on with her studies after the surgery?
With the Autism Spectrum Disorder it makes this all the more difficult! Not sure how to handle all of this. I knew she had this but we thought she could wait til she was atleast 15 or that was the origional prognosis.
Julie mom of Boo
On his cleft closure surgery earlier this year, we had some concerns about our sons fears regarding the surgery. They referred us to the Child Life Office at the hospital. They are conselors that came in to talk to our son about his surgery and his fears. It was awesome. He stayed very calm.
The Child Life Office can speak with your daughter to help her to understand why all these procedures are necessary. Our son now understands that they have to do the surgeries in stages to go along with his growth. It doesn't make going through the surgery easier, but it can help.
Our son had his last surgery done in June, and could have had the second side done as early as August. We are choosing to wait until just after Christmas. Our surgeon is very cool with this. Unless your daughter has a pressing need to have this done now, you may be able to delay the procedure until a later date. If it were me, I would do all I could do get a second opinion. You are entitled to it.
Delaying surgery (again if possible) could be just the peace of mind your daughter needs for a while.
As I said, the Child Life Office was a great support tool for us. I highly recommend it. If your hospital does not have this available, I would suggest another couselor who deals with children.
My best to you and your family.
Tina
Sorry for the mix up i hit enter by accident!
julie mom of Boo!
The reason I say this is because the physical aspect of cleft issues is a very very small issue when compared to the psychological effect it has on the person. Clefts are not life threatening, and if she is fighting the surgery, I would not force her to do it. Especially since she has been able to function, speaking and playing an instrument, up until this point. Eventually, she should come around, but until she is ready.
I understand that it is difficult considering her ASD and ADHD, but there is a way to reach her and there are specialists out there that can guide her.
The number one thing that I heard as advice is to be my child's advocate, not the doctor's.