Cleft lip without palate

LeeAnn - posted on 10/30/2009 ( 2 moms have responded )

My baby was born at 35 weeks and weighed 5lbs 7.4oz. We have NO family history of any type of cleft. I was wondering about how many surgeries it will take and how old will she have to be before they repair the cleft? Please reply i would really like to know. Thanks!

LeeAnn

Join Circle of Moms

2 Comments

View replies by

Vikki - posted on 12/13/2009

my son was born at 34 weeks and had a cleft palate. He had two operations to repair the palate. I was advised by his surgeon that in the future he might need surgery to repair a fistula. He has ongoin speech therapy and a lot of extra help at school. Chris is 8 now and im assuming things may have changed a bit but it only seems like 5 minutes ago since i was feeding him with a rosti bottle.

Jamie - posted on 11/09/2009

It really depends on the severity and your doctor. I am not sure about where you live and the services provided. In KY, we have a program called Commission for Children with Special Health Care Needs and they help financially and connect you with many specialists like cosmetic surgeons, dentists, orthodonists, dieticians,etc. You can contact your local health dept or peditrician for info.

We called a plastic surgeon who specialized in cleft lips when we left the hospital, but they didnt see Ethan until 6 weeks old. He had his first surgery at 8 weeks (expect a new baby because they dont look anything like the baby you have grown to love), then another surgery at 6 months for a lip revision, palate repair at 11 months, and then another lip surgery at 2 1/2. We have many more dental surgeries once he gets more teeth.

The journey is long and hard but the kids are worth it. God makes them troopers because they can handle so much at such a young age. I don't know what your beliefs are, but pray for peace because it is very hard to hand your tiny baby over to doctors and then wait in the waiting room.