Need someone to talk to

[melainic@yahoo.com]

My daughter was born with a complete cleft palate. She is now 4 months old. It did not come as a surprise to us, because I was also born with a soft cleft palate. Even on my husband's side of the family there were two cases of cleft palates. Solid foods are coming, and I am at a loss. I am also not sure what to do when she starts to hold her own bottle. I was looking for someone to talk to that is going through the same situation.


Thank You!

[Scardycat1@hotmail.com]

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.

[kristaclinton@hotmail.com]

Hi,


My daughter is 14 months old as of yesterday and she was born with a cleft palate (just of the soft palate). I had been born with a soft and hard palate cleft. I never expected my daughter to be born with it and later found out that I have stickler syndrome and now all my children have a fifty percent chance of being born with it.


I remember how daunting the first couple of months were. Kaylee was operated on at six months old and has thrived since. She never did get off the haberman bottle after surgery but I made feeding time a special time and she always was in my arms when she fed. I started weaning her off the bottle at 10 months old and her first birthday was her first full day without a bottle. She has not had one since and does fine with sippy cups.


Kaylee had weight problems so we started solids early-with the advice of her doctor. We had to mix one tablespoon of baby food to about two tablespoons of milk. It was more like soup but it gave her the extra flavour and the extra calories. Some doctors suggest not to begin solids at all before surgery.


I know it seems difficult now but I promise you that it gets better. Kaylee is a happy, healthy, extremely funny child. We have been blessed with her in our lives and now look back at all our worrying and wonder why we did that to ourselves.


I wish you and your family peace.
God Bless,
Krista

[pudgesgirl]

please i need someone to talk to