Worried Mom needing reassurance

[andyandmegan@yahoo.com]

Hello!


My son was born June 20th, 2001 with a small
cleft palate. Whwn he was 4 wks old we took him
to Sick Kids hospital in Toronto ONT to see their
team of specialists. The plastic surgeon we saw
told us it was a very mild case, probably needing
only one surgery, which they would do when our
son was 12 - 14 months. Right now he is doing
great. He is feeding using the Habberman feeder.
My concern is that I am told I have to have him
weened off the bottle before they preform th e
surgery, and I am scared to death to start
intrducing cereal and other foods for fear
he will choke or something. Right now he is on
just expressed breast milk. Mostly I just need
someone to tell me everything will be fine and
pass on any good advice they may have.


Thanks so much


Megan Evans

[Mel U.K.]

Hi, My son was born with a complete cleft palate
7 years ago. I weaned him as normal at 3 months
he coped fine with this, by the time he had palate
surgery at 11 months old he was eating everything,
(raw carrots,apples,biscuits and drinking from a
proper cup which he managed at 5 months!! try not
to worry too much. good luck to you all and congratulations
Mel

[Susan]

Feed him, feed him, feed him! Forget gummy, lumpy cereal and start with some carrots. Thin the baby food slightly, the consistancy of tomato sauce. After he has finished eating you can use a mild saline solution like Little Noses to clear out any food in his sinuses. A few drops on the end of his nose should be snuffed right in. We have to use a syringe (minus needle of course!)with about 50 ccs to flush and then suction out nose with a bulb aspirator, but my son has a complete cleft. Try doing this after he falls asleep, it is much more pleasant. This will keep any food from causing congestion and I think helps with general health. Once he has moved on to more varieties of food, start practicing with a cup then give him sips of water with his meal. Again, it will clense the palate and does wonders.
They are very easy to train, just be confident and FEED HIM!!!!

[nmkraus@ameritech.net]

My son was born in April 2001 with a cleft lip and palate. Both were also mild cases. His lip was fixed at 12 weeks and his palate will be done at 10 months. We just started introducing cereal and fruits about a month ago and I was a little nervous, too. But he got used to it after 2-3 days and now loves to get his bananas and cereal. Some does come out of his nose occasionally, but not very often now. You'll learn to read his signs when he can't eat certain things (like my son can't tolerate applesauce), but it will be ok!

[Bridget]

Hi, My son was born on 2/9/01 and diagnosed with a small cleft palate, he is due to have surgery on 10/10/01. He will be 8mo in 3 days and he's been on stage 2 foods for a week already. At 4mo he was eating cereal and about 2wks after the cereal I also started him on the fruits and vegetables at certain times it would come through his nose but probaly for about a month or more he's had no problems. I believe around the 4th or 5th month I switched him to a playtex nipple because he would finish his formula in about 5minutes using the haber nipples.
I hope I was some help, If your interested I can let you know how the surgery went, if so email me at Carlton81@aol.com and in subject but cleft palate.


Good Luck
Bridget

[Anonymous]

Well I guess your baby is only almost 4 months old? The suregery isn't until 12-14 motnh of age. I'm not a doctor but I can suggest that you wait until as long as possible before it comflict. I think I just wanted to introduce my son to cereal just because and I made it really runny and added more and more cereal as time went on. You will probably have a difficult time trying to wean off of the bottle but be patient and get help from family members and friends. You will need time off/away. Make sure when you leave your baby that who ever is going to watch him or her is patient enough to sit down and hear you out about how much or how to place the baby or warning signs of chocking. My son ate with a syring and a rubber tip at the end. The babysitter listened to me and I felt much better to sit down with her and explain carefully to her.


Bottome line do it little by little. Your baby is very young and I agree he or she might chock a little or a little more than that but it's a slow process. Good luck.

[ldarnell92@hotmail.com]

I agree, feed him! My daughter was born with a large cleft lip and palate and also Down Syndrome, so we had a hard time teaching the food deal, but we started feeding her cereal at 4 weeks of age, to thicken up her food, and she was eating out of a spoon when she was 6 weeks old! I have learned that what you expect from your children ,,they WILL do! good luck and god bless!! Any0one feel free to email me ldarnell92@hotmail.com

[Nicorbee]

The best advice I can give you is to treat your child like he is any other normal child. My daughter was born with a very wide unilateral cleft lip and a bilateral cleft palate in June of 2000. She is now 15 months and a very happy well adjusted little girl. You will find that you have some difficulties at first but be patient. Your baby needs time to adjust. Once the adjustment period is over... you will be surprised at how strong and able to cope your baby is!! I know I was.

[decemberoak@home.com]

Things will go just fine with the feeding. Just treat your baby as if he doesn't have a cleft. Try to relax. My son Jake is 10 months. He has EEC which includes cleft lip and palate. I started feeding him cereal at 4 months. At first he pushed the food up through the palate and it came out his nose. It was messy, but not a problem. He got the hang of it after a couple of days. Jake has been through 8 surgical procedures, and is scheduled for his palate repair in Jan. I have not been told that he needs to be off the bottle. I cannot imagine why. Jake is just starting to use a cup with a rubber tip. It doesn't have a valve since he cannot seem to get enough suction. He is slowly learing how to use it, but mostly plays and bites on it. I am hoping he is taking his milk from the cup more often by Jan., but I didn't intend on getting rid of the bottle until after the surgery. Our plastic surgeon is so wonderful. He reassures us by saying that kids have been living with clefts for years. Some don't have surgery until they are older, and they learn to eat just fine. I keep that in mind every day as I try to feed Jake "Lumpier foods" and he gags.
Please feel free to email if you have any other questions. Michele

[daviddelp@yahoo.com]

my daughter waas born with a bilateral cleft, we fed her by squirting the formula into her mouth. she had the most sever case and has undergone 12 surgeries. She looks wonderful now at 7 years old.

[kvanormer@aol.com]

My son Henry now 11 mo. uses a habberman also.Small cp also. He is eating jar food-thickened with cereal and cerreal bars. He has learned to push the food to the back of his mouth to swallow. He occasinally gags alittle, but he has learned to adjust. Best Wishes. write to me if you'd like more info.

[sheena]

we have a16day old baby with similar problem.we have heard of hiberman feeder but right now we r 'cup feeding'him.a small plastic cup filled with breast milk or powdered milk is rythmically fed to the lower lip of the baby.baby should be upright.this method allows countinous feedig and is fast.if not care ful milk will come out of nose.we were told surgery will be a yr later.keep contacting
love/prayers[a friend of mine says her cousin had a cl;eft palete baby who was later operated and is now speaking satisfactorily
sheena