HELP! Cleft Palate Info.

Updated on December 01, 2010
A.M. asks from Spring Hill, FL
8 answers

My baby goes for surgery in a week. 3 Doctors say that after the surgery even if she needs ear tubes, her hearing loss will be minimal, if she has any loss at all. One doctor with no bedside manner seems to think she will have a lot of hearing loss and may even have problems her whole life. Plz. I need advice I am going crazy. I don't want my daughter to go deaf. Has anyone had an baby with a cleft and if so how was the baby's hearing after the surgery? We have to get the surgery done on the 8th of dec, she is gettting the tubes done anyway because it is better for her in the long run. I just want to make sure that when she gets the tubes that her hearing will improve.

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So What Happened?

Well the doctor was the only one in our area that works with the cleft palate specialist that we were using. The operation was a success and they feel confident it will be the only one. She is having some trouble adjusting but seems to be hearing fine. There was some fluid behind both ears but is now draining properly because of the tubes. I did look up the doctor on many rating sites before the surgery and she had a very high rating. She is a good doctor just has a bad attitude. We should be leaving the hospital if a couple of days. Thank you for all your help. I will keep you updated.

More Answers

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S.B.

answers from Redding on

Sorry if I'm reading this wrong, but it sounds like you have 4 opinions.
3 out of 4 doctors think she will have minimal hearing loss, if any.
You can try getting another opinion, but it might just complicate things.
I personally would have the procedure done because a cleft palate entails far more than hearing issues.
When I was a young girl, my mom's best friend had a cleft palate. It was never corrected. She was beautiful and nice, but she talked "funny" and couldn't hear well at all and eating was a challenge for her because it was never corrected.
We didn't have the advances back then that we do today.
She was a grown woman with a palate that had never been corrected.

I'm so sorry you are going through this, but I would find a doctor that I trust and have the procedure. That's just me.
I know it's scary, but surely they have explained what will happen if you don't have it done.

I wish you the very best. I really do.

1 mom found this helpful
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N.R.

answers from Des Moines on

So far all of the answers are from people who knew someone who had cleft. I had a daughter (adult now) AND her son (who we're raising) who both were born with cleft palate only - no cleft lip. One surgery was done at 1 1/2 yrs. of age for both of them. There were no complications, speech problems or hearing problems. Because the Eustachian Tubes (ears) connect to the palate, when the palate muscles aren't working properly and food/liquids back up into the cleft opening, bacteria sets in and causes the ear infections. Even after cleft palate surgery when the mouth opening is closed, the Eustachian Tubes may not work 100 percent correctly due to the original birth defect. If your child has mild hearing loss before cleft palate surgery and ear tube placement, having ear tubes put in may remove the fluid/bacteria in the ears, allowing for better or normal hearing. If hearing isn't improved after these surgeries there is a good possibility that your child may have inherited some degree of hearing loss, unrelated to the cleft palate.

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M.M.

answers from Washington DC on

Big HUgs M..
Having a child with a birth defect can be so overwhelming. That Dr needs to have his mouth duct taped.
There may be hearing loss, there may not. Mine had cataracts, in a child the surgery could lead to blindness, it could be fine. My daughter is fine.
Her best friend in Kinder-2nd had a Cleft palate and at 7 was going through his 5th or 6th surgery. His hearing was fine.

My son had tubes but we didn't get them until he was 4. His hearing has been affected even though all the tests come back normal. He lost some of the sounds he should have developed at 1 and 2 and now can't discern certain sounds when there is a lot of commotion.
Prayers for your little one and you too.

S.P.

answers from Nashville on

Back when i was in school i had a friend who had cleft palate and she had the surgery ( I guess when she was a baby since i knew her all through elementry school) But she didnt have any hearing problem. I would def. go with the surgery. Best luck to your baby:)

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D.H.

answers from Sarasota on

My daughter and sister were both born with cleft lip and palate. I don't understand why a doctor is telling you she will have hearing loss. That has nothing to do with the problem. If she had repeated ear infections that would be a possibility, however, you are having tubes put in to avoid that problem. My Craniofacial team is excellent, they are at Shands at University of Florida. It sounds like you need to stop seeing the doctor with the poor bedside manner. My daughter is 4 now, she looks beautiful, and is well adjusted with zero hearing loss. Good luck to you and your daughter.

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C.S.

answers from Las Vegas on

My cousin had cleft and I don't recall her having any hearing problems. It seem as though your daughter already has hearing loss. The tubes do some times clear up some of the hearing problems because the fluid is able to drain. Just slow down and take it day by day. Your baby will be fine, even if there is hearing loss. You can't do any more than that.

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C.A.

answers from Atlanta on

My neice was born with a cleft as well. Her's was very minor compared to some of the pictures I have seen but she had to have the surgery at 3 months of age I think it was. My neice is now 15 and you can't even tell unless you know what you are looking for. As she grew there were boughts where she suffered from ear infections and eventually did have to have a set of tubes in her ears. Eventually the older she got the better and I think she only had one set of ear tubes. Her hearing is perfectly normal to this day. She also had issues of constantly getting strep and ended up having her tonsils and adenoids removed. The child rarely gets sick anymore and I don't know if the two are related to the way she was born or not. I had twins and they probably suffered from ear infections more than her-they had two sets of tubes-their hearing doesn't seem to be affected though and they are now almost 8 and knock on wood we haven't had any issues-not like it used to be. I can't explain why mine had the ear infections like they had-it just happens but my personal opinion is I think it may have been due to the fact that they were born early. I only carried to 36 weeks. However I have known others to have babies before then and not a single problem with ear infections-not one so who knows?
I think I would find another doctor quite personally. If you don't have the confidence in him nor the trust or simply just don't like him then why would you entrust him with your most treasured item-your baby. I think he is making presumptions based upon statistics or perhaps his experience. That doesn't necessarily mean your baby is doomed to have all these issues. Each person is different and just because they have a cleft doesn't mean that those statistics have to be a stigma in their lives.
Like I said my neice was born with one-had the surgery when she was just 3 months old-people looked at us weird like we had beaten the baby or something and some people were nice enough to ask us and when we explained she had a cleft palate and had the surgery the response was almost always the same "Oh poor baby!" but then you could tell like this look of relief come over them when they found out it was a medical condition rather than whatever else they were thinking it was.....expect the looks and the stupid comments from others your baby will be just fine but I do think you need to go shopping for another doctor if you can. Who cares that the surgery is a week away......you have to be able to trust your doctor and it doesn't sound like this doctor's attitude or medical opinions for that matter seems to be within you and your child's best interest. Why is it that "some" doctors have to be complete pricks.......They think they are god. I love it when I come across those good doctors because it makes me realize that not EVERY single doctor out there is like that. I am lucky enough to have a mom in the medical field so she knows the names and she knows who is good and who to stay clear from. Combined with my sister going through all she had to go through with my neice she found some really great docs. My ENT was the same exact ENT that my sister used. Another doctor within his same practice just performed sinus surgery on my dad. If I have a concern and it requires me to go and see a particular kind of specialist/doctor the first thing I do is ask my mom...if she doesn't know she has a handful of doctors to ask who they would recommend or who is good or not so that I can check my insurance to see who I can go see. Not everyone has that luxery but if you know anyone in the medical field -anyone ask them and if they don't know ask them if they know anyone they or you could ask. To me a doctor could be the best of the best but if their bedside manner is horrible then that would surely put a damper on my decision.

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B.R.

answers from Naples on

I'm not sure how old your baby is, but my sister adopted a toddler from China with a very very severe cleft palate. His teeth had already come in, and were sticking straight through the front of his lip under his nose! After she brought him back to the states - he has had several surgeries in the last two years. After the first - he had some minor complications with seizures from the pain meds - but they just keep him a little longer in the hospital now and really watch him closely - no more problems. He has a slight speech impediment - but I think that it has more to do with having to learn a second language so different from his own at the age that he would have started talking and having all those surgeries in his mouth. He seems to hear just fine - and responds to speech when up close and when he is across the room or pool or wherever! The only thing that my sister is extremely cautious about with him at this time (I mean in regards to the cleft, and surgeries -still concerned about all the normal stuff) is one time when we were together because she was visiting FL - I saw him standing with someone else and he had a straw in his mouth. She couldn't get it away from him fast enough because if he stumbled or pushed it in the wrong way he could have really caused alot of damage.
On another note, my niece had a baby 2 years ago, and while still in the hospital they tested her hearing and she failed. Follow up testing revealed that she was born with severe hearing loss - I don't remember exactly - but something like 40% in one ear and 80% in the other. She has custom made hearing aids fitted a couple of times a year, and has a speech therapist. She already is able to follow directions, respond when spoken to &is learning to talk. It hasn't affected her in any other way - she is happy, well adjusted and seems to be getting along just fine!
I guess I don't really have any advice, just words of encouragement. Keep your chin up, I'm sure she will be fine. Kids are very resiliant, and he may just be telling you "worst case scenario" stuff just in case. I'm sure she will be fine, and if she has some hearing loss, she too will adjust. I don't want to sound crass or mean - like I'm dismissing it or anything, but goodness, there are are alot worse things that could happen!
& PS: my nephew that has had the surgery - by the 6th month after surgery - you could barely detect a scar, and now........not at all! (he's 4 now) Good luck, and God Bless!

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