Cleft Lip and Cleft Palette Treatment for Baby

Hi S.,
I do not have any experience with cleft palate, but my mother works for the Lancaster Cleft Palate Clinic in Lancaster. I assume you already know about them, but just in case you don't, I wanted to drop you a line. They are world renowned for their services and are a great group of people!

Good luck to you.

Well Congrats on the little girl! My friend had a baby that had a cleft lip and palette and she had the surgey and the only way that you can tell is her speech is delayed and she has a small scar on her upper lip. hope this helps and good luck. N.

I do not have experience with this first hand, but I do work in the dental field. I do know that the University of Pittsburgh dental school has specialist in this area. I would check them out if you are near Pittsburgh. Best wishes.

Congratulations on your little girl! I actually have a brother who had a double cleft lip and palate. He had several surgeries and recovered wonderfully. He needed special bottles to drink from, because he couldn't suck, and some speech therapy, but besides that and his surgeries, he was totally normal. The doctors usually evaluate them on a yearly basis and do surgery as they grow. He is now 18-years-old and doing wonderful. Unfortunately, I grew up in Missouri so I don't know the doctors around here, but I am sure there are some good specialists around here as well as some good dental specialists if she would need them. Good luck!

My daughter had a cleft palate - this did not affect her lip at all. I do know they repair the lip early. With our daughter we were told they wait until the tissue grows and there is enough there to make the repair on the palate. My daughter had her surgery at about 18 months - we didn't go through any stretching or anything - I'm unfamiliar with that. Her palate was repaired in one surgery - I would think with a lip involved it would be done in two steps. I'm not sure where you live, in Lancaster County is the Cleft Palate clinic - they may have info you can read up on before the birth.

Depending upon the degree of the deformity, it will depend upon when they will have to do surgery. A friend of mine has a dd that was born with this. They will do sugery sooner for the lip than the palatte.
You can also still breastfeed if you have this type of problem. The breast will actually conform to the shape of the mouth and the baby can still nurse. The only time I have seen it not work is in another friend of mine whose baby girl had the seperation in the far back of her palette and the hole kept breaking the suction on the breast.

My son had a cleft lip, they had missed it on the 1st sonogram but caught it on a second. They didn't know if he had a cleft palette until he was born; luckily for us he did not. His first surgery to fix the lip was at 10 months at Hershey Pa. It was late because they were "behind" because of all the patients they had. I did breastfeed until 5 1/5 months. That worked well because my nipple could "mold" into his cleft lip and allow him to get good suction. After I quit breastfeeding, I got bottles with nipples that had bigger holes so the breastmilk or formula came out easier. I also found with sippy cups I had to get the ones that did not have or I took out the anti-leaking piece because he could not get enough suction on the plastic tip. My son had a second surgery at 3 to straighten up the scar and remove some of his lip (he looked like he had a fat lip because of the extra tissue on one side of the cleft). The first surgery was of course the worst because he was so young, but it was done as an out-patient. Luckily before the surgery in the waiting room, there was a girl about his same age that he played with... he could not eat or drink before the surgery and after we went back and before the gave him "the drug" he was quite cranky. "The drug" is a simple drink that makes them.... drunk almost. It made it so they don't remember anything afterward and my son just went to the nurse who carried him back to the surgery which made the separation easier for him and us. They gave him the same drug before his surgery at 3 too and he again went right with the nurse and didn't have any problems with stress on his part. After the first surgery, he was very fussy, but I sang the song I sing to him at bedtime over and over while rocking him and that helped. When we took him home we had a 3 hour drive home.... that was long. Once we got home, again the bottles with nipples that let milk come out easily worked just fine. We popped in Thomas the Train, his favorite show, and he settled right down. They had also put plastic tubes in his nose and actual stitched right through his nose to hold them in place. After a day or two, that was actually the worst part. Of course then there was the day (since he was 10 months, he was pulling himself up and walking furniture) he slipped and bashed his mouth on the furniture and it started bleeding... Overall, I think it's harder on the parents than the children. The drug they give them lessens their stress before and after the surgery considerably and then the pain relievers afterward help them. Unfortunately I don't have any experience with the palate, but hopefully some of my experiences can help you too. Good Luck and congratulations.

Hi S.,

I have not had first hand knowledge about this except that my niece (who is now 14 years old) was born with a cleft lip and palette. It has been a long hard road from the day she was born til now for them. She has been through many surgeries and braces and more surgery. She just had the operation to reconstruct her nose and top lip. It turned out awesome. She spent alot of time at the Lancaster cleft lip and palette center in these past 14 years. Through everything she has been through it has made her a very strong social person.

It is awesome that they can now tell you ahead of time so you know what to expect and won't be so shocked. My sister-in-law did not know about her daughter having it until the moment she was born. It was hard for her to handle at first since it was thrown on her so suddenly.

L.

Dear S. Congrats on the baby. Thank god you have an antenatal diagnosis. That helps with planning. Best thing for you would be to call the Childrens hospital of Pittsburgh which would be the only place your young infant should be cared for. The plastic surgery team runs the cleft lip palate clinic and are wonderful. I would do the calling early on even before the little one I'd born.
Best of luck with everything. In good hands clefts depending on the severity may make almost a minimal impact on your baby's life in the long run.

Hi S.!!

I had a little boy(Nathan) in Sept. of 06 born with a bilateral cleft lip and palate. Shocker at my 20 week ultrasound to find out as I'm sure it was for you. His first lip repair was done at about 4 months of age and he had his palate repair at about 10 and half months. The lip repair was rough, recovery wise. However the palate repair which your team will assure you is thougher surgery, was amazingly a way faster recovery. I'm an expert at this point on anything you are concerned about so don't hestitate to ask. My email: ____@____.com Good luck and congratulations, your baby will be beautiful!!!

M. Roeck
(Spring City, PA)