Cleft Lip and Palate
by Daniel on Jun.29, 2007, under Personal
As I mentioned in my catching up about my next child. We have had a lot of ups and downs with this pregnancy, from my wife’s health to the recent discovery that my son will have a Cleft lip and Palette. The cleft is a bi-lateral cleft which is the rarest form, and affect both sides of his lip, and with that there is about an 85% chance he has the palette as well. And one of the ultrasounds was pretty evident of that.
I’m a stats person so I live by numbers. The chance of getting the birth defect is .018% (no not 1.8% it’s .018%). So the chances of a nurse having experience with it are minimal, but fortunately we have Primary Children’s in Utah that are some of the best. With my wonderful wife, we’ve been studying what to expect.
1. 3.9 surgeries in the first 5 years. They will start at about 10 months
2. 66 Dr. appointments in the first 5 years.
3. 15% mortality rate in the first year because of other issues that might stem from this.
So what does it mean? Stress. Lots of it. The bottles cost $16 a piece and then last 15 feedings. Feeding the baby will be unique cause he won’t be able to suckle.
But good news it’s a boy, and yes we already have the name picked out 
Email This Post
March 17th, 2009 on 1:28 pm
My grandson who just turned a year old was born with bi-lateral cleft lip and palate, about as severe as it gets. We found out after the very first ultrasound. I was scared. I could talk for hours, but I will get to the point and tell you that once we got past the feeding issue (and yes, it is an issue), our imaginations were worse than anything that could happen. He has no other issues and he is absolutely adorable almost because of the cleft not in spite of it. He has had his lip and nose surgery and is now scheduled to have his palate fixed and get tubes in his ears. We were honestly a little sad when they took him into surgery and we knew he would look different when he came out; we were very attached to the way he looked, believe it or not. He is a very normal little boy with a huge smile and dancing eyes, we love him so much….If you have questions or would like to see some before and after pictures, feel free to contact me.