by Scardycat1@hotmail.com » Mon Jan 22, 2001 9:26 am
I don't know how much I can help you. My son is now 19 years old. But I can remember has if it was yesturday all that we went through as he has grown up. When he was born, the nurses in the hospital didn't know how to handle a baby with a cleft. they tried all different kinds of things to feed him. Even to using a feeding tube in the nursery to give him his formula. I tried to breast feed but he didn't have the suction for that. He was born with a bilaterial cleft palate and a unilateral cleft lip. There is a program in our state. Someone in the hospital knew enough to call them and someone came down to the hospital to visit with us. The first thing she said when she saw him trying to feed was that he could suck the nipple that they didn't need to do everything they were doing.
She had them get a premee nipple with a cross cut in it. It worked. He was able to suck with the soft nipple with the hole we cut. I will tell you we tried all the nipples out there for clefts and none of them worked as well as this did. When he came home a few days after that we went straight up to the hospital that had the program. We were seen by a pedidontist and a plastic surgeon. The first thing the pedidontist did was make a feeding plate that we could put in the help the food go in the right direction. It looked just like the palate and it worked. We put it in to feed him then took it right out when he was done eating. Much like what a person uses who has had braces. The only difference between feeding him and a child with out a cleft was putting that plate in to feed him. I will tell you we went though a couple of them because of loosing it or kneeling on it by accident, but after a while he didn't even use the plate anymore and ate normally with his formula and his food no problem. Also he would hold his on bottle with no problems at all. I probably shouldn't even say this to you because you have lived your life with this already but if you don't worry about things and just go with the flow. You will find that your baby is so much more capable of things and no matter what anyone tells you, you will learn what works and what doesnt' on your own. You will be telling the doctors what works for you and what doesn't. You will be the expert. Even when your little one is in the hospital for surgery's you will know what is best. Keep an eye on things and make sure you get the best treatment. If you have a problem, talk to your doctor and tell them.
My son has been through many surgeries. But he never was treated any different than any of child around. Put faith in yourself, you will know what and how to do everything. Don't worry about it. Just love your little one and enjoy.