Cleft Lip without the palate

LeeAnn - posted on 10/30/2009 ( 11 moms have responded )

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My baby was born at 35 weeks and weighed 5lbs 7.4oz. We have NO family history of any type of cleft. I was wondering about how many surgeries it will take and how old will she have to be before they repair the cleft? Please reply i would really like to know. Thanks!

LeeAnn

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Kimberly - posted on 03/26/2010

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My son was born 7.12 lbs, at 38 weeks and we didn't have any family history either. I asked the doctor and researched what can cause it. It is many things and they don’t have just one reason. Our son had bilateral plexus cysts on his brain (fluid on the brain) and they think that is what caused it for my son; he also has several other health issues due to it. Anyway he had his surgery at 4 months. His lip was very slight, no pallet, on one side and didn’t even reach all the way to his nose. The doctor said that he may need another one when he is about to enter pre-k to even out his lip more if it doesn't with growth. It depends on how severe it is. It is tough because they had him in arm restraints so he wouldn’t tear the stitches. He is now fine and we try our best to work out the scar tissue but it is really hard because he hates it. It looks a lot better compared to what it was and well worth it. You always have someone to talk to about what is going on and feel free to message me. Good luck

Brittany - posted on 03/24/2010

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I am expecting and my doctors told me since my sons isnt too bad they would like to start as early as a couple of days old... Not really sure on how many surgeries everything will take but like I said He isnt here yet and This is my first child...

SAMANTHA - posted on 02/20/2010

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i live in nc and the surgery was done in tenn at erlanger we had no family history either.he did have just a partical cleft lip , so it didnt run up into his nose but his gum did have a horse shoe notch shape right under his lip on the same side . they figured it was where he began to have a cleft palat but didnt progress , so they stiched his gum and lip at the same time.well i had a wonderfull dr. and my son had to be 4 months and at leat 10pnds...he had to be 10 pnds, that was the major thing. and it only takes one surgery and it doesnt take but like an hr.... you feed with a surenge they wear nonos.that keeps them from touching their lips and then they take stiches out and put that clear like liquid bandaid on ...you will buy a cream to rub on the scar and the cream makes the scar tissue soft and takes away the redness , thus you cant even see the scar.....good luck..God Bless...he goes every yr and they take a picture and just observe the lip.no big deal and he has had no problems...he did have 11 yr infections his first yr we do not know if this was bc of his cleft but we got tubes at 2yrs and they came out and he hears and talks perfect..this was in 2004 , so he is fine now and perfectly normal with no problems.

Teresa - posted on 01/18/2010

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Hi, a late reply. My son was born in Germany in 2006 with a cleft lip and jaw. He hat a retainer at 8 weeks and the Prof. managed to push his jaw to make the OP easier. He was operated at 4 1/2 months and it would have been the main op but he had an allergic reaction to the stitches and his lip had to be redone at 14 months. He has problems with his ears (common) and had his second set of tubes put in last week. We are still looking at at least two OPs one to thin his lip when he is 5 or 6 and his nose when he is full grown.

I don't know where you live, but I know that the Shriners Hospitals have started dealing with clefts as well as it is very specialized and they help with the costs.

We looked into the reasons why this happened to us (although now, Alex is the sun shine in our days, he has a glowing personality and it doesn't matter). There are a lot of theories out there...one woman told me I drank too much coffee, which is interesting because I don't drink coffee! I had an accident in the 8/9 week of pregnancy. Some doctors say they must be two factors that cause it to happened. Did you know that in parts of South America, Clefts are considered holy, children with clefts are considered to be touched by God...keep that close to your heart when the frustration gets to you.

Teresa

Naccona - posted on 01/14/2010

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I live in Kansas and my son was born with a cleft lip and palate in 05. When he was 10 wks old and 10 lbs they did hid first surgery to fix his lip, and then when he was 11 months old they did his palate and from the looks of it that is all he is going to need. He has had a few more for tubes in his ears, but that only take 5 mins at most to put them in. He has passed his hearing test after a set of T-tubes, and he is in speech. But other than that he is doing wonderful. If you only have a cleft lip as long as you have a good doctor, I don't see why you would need more than one surgery. Good luck and I hope everything works out for you guys.

[deleted account]

My son, who is now 13 and doing great, was born with the cleft lip only. We also had no family history of it either. He was 4 months old when he had his surgery. He did great and never needed another surgery. They continued to monitor him on his speech and hearing and that also was doing well. We went to Children's Hospital in Pittsburgh, PA. They did a fantastic job. Good luck and I'm sure all will work out great!!

Jean - posted on 01/02/2010

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2 Nov. 2009, 7:11 am
My son is 37 and still had a fissure for some time but it is closed on its own and he is doing well. He had many surgeries , almost every summer until he was 16, mostly to revise and smooth the outer scar tissue.
He looks great; is a teacher and doing well. HIs self confidence at times over the years was low; he was quite self conscious. When I said how beautiful a child he was, he said I could say that since I was his mother. I
t sounds like your surgeries are according to the Bardach method. Dr. Bardach came to Iowa from Poland the same month my son was born. It was rather miraculous. He became my son's surgeon in Iowa City. Until that time the palate was not closed until age 5, causing all sorts of speech and health problems. Dr. B introduce his method which he had performed in Poland 30,000 times.My son Jeff and another Jeff were his first two patients in the US. Jeff's case was well-documented. Dr. B has passed now but left such a legacy through all those he trained.
Jeff had no real speech problems; the speech therapist wanted to put a flap in back of his soft palate, but we decided it was not necessary then or now.
I had no support group like this and had little support from my husband at the time...Family was great and mothers I met at the hospital helped too. The medical community in our town also was great although my dr. had not had a cleft palate patient before. The pharmacist helped me so much at first, finding bottles and lamb's nipples I could use to feed him ...Some of the nurses were still encouraging me to try to nurse...such folly. After Jeff's second surgery, I presented our first year journey to the hospital staff, since it was a learning experience for them as well. How things have changed...
. When Jeff was born the doctor's first words were, "Oh, no, we have a problem." Every birth defect I had ever heard of went through my mind, except cp. That is really what got me through it all, knowing that cp was nothing compared to some of the defects he could have had. He was such a cuddly child and always smiled. He was valedictorian of his hs class and is so intelligent it blows my mind.

When I saw my son in his tuxedo as a groomsman in my daughter's wedding, I knew all those surgeries and struggles had been worth it/ He looked gorgeous and was so social.

Also when he was in 5th grade and was starting band, he chose the trumpet. The director said he would never be able to develop a "lip" to be any good at the horn...he became first chair in marcjhing concert band and jazz band; played in the Hawkeye marrching band and basketball pep band for two years. Never let it be said that it cannot be done!!!

We also had no history of cp or any other kind of birth defect. Drs

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Hi... My son, Hunter (18 mos) was born with bclp and we too do not have any family history of cleft. All that I can tell you is it is going to be alot of surgeries. Hunter, before he is 2 years old will have a total of 3 surgeries and then the Cleft Team as told me that there is a likely chance that he will have at least 10 more before his reaches the age of 13. You and baby are going to be just fine. God has his ways for making everything okay. :0)

Herculina - posted on 11/17/2009

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My son with born with a cleft and our doctor in South Africa first repair his cleft on 6 mnths and 6 weeks later his lip. He is now 16 years old and we are going to have our final operation next year. I agree with Jennifer that it is differrent from child to child. Izak father had a cleft.

Jennifer - posted on 11/17/2009

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Tyler was born with a cleft lip that just barely split the front of his gumline. I was told two surgeries. One for the lip and one for the gum. The lip repair they can do as early as 10 weeks as long as the baby weighs atleast 10 lbs. Tyler had his lip repair when he was 6 months old because the dr had alot of surgeries scheduled. The repair went great and three months later there is just a tiny line on his lip...it barely looks like a scar. Complete success in my book. Also, we also have no family history of clefts. I hope this answers your questions.

Sylvia - posted on 10/31/2009

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You'll have to check with your Drs unfortunately. Everyone is different. Tripp has bilateral cleft palet and lip. He's been through so many surgeries it's a little crazy. We didn't get Tripp until he was 10 months old so we did his repair surgery arould 13 months old. It was difficult for him to eat until then. After his first surgery here in the US his quality of eating changed greatly. Until then we used special bottles and spoon feed him liquids. I know his isn't the straight answer you wanted. Sorry I would love to share more with you about food and vitamins we do forTripp. Let me know if your interested.

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