[murdoc]

Hi,
we have recently been referred a child from our international adoption agency that has a bilateral cleft lip. For the moment we don't have a lot of information on the baby's condition but we do know that the cleft in NOT in the nasal cavity.

I'm a little lost on what all this means other than what I can find on the net. But none of that tells us what it would mean to us as adoptive parents. Has anyone adopted a child with a cleft lip and had to have it repared? What is it like? What were the costs and hospital visits like? how did the child handle the operation? Were the results what you had hoped for? What are the secondary factors involved?

We are a little curious as to what to do next if anyone has any advice we would love tohear it.

[shy_bear]

I don't know anything about cleft lips, but contact the local Shriner's organization in your area. They have docs come in and do referrals to Shriners hospitals...there is NO cost involved at all regardless of what you make and what insurance you have. We were told if they accept your child as a patient, they even have local docs that will do the treatment vs. traveling to one of their hospitals.

[BrandyHagz]

Check out the China Forum - there are a few people there with kiddos who have had cleft repair surgery.

One resource might be Specialk4b - her son recently had surgery after coming home. Adoption.com Forums - MyPage: specialk4b

[athikers]

Try pm'ing Withay... she specializes in foster children with cleft palates and she should have a lot of good info for you.

[linda512]

If it is an isolated cleft lip, even bilateral, it is purely cosmetic and can be easily fixed. I would only make sure that the cleft is not part of a syndrome with other issues. Even a cleft palate can be fixed with good results as long as the child is not too old.
Good luck.

[atouchofheaven]

i have an adopted child with bilateral cleft lip and palate. he had the surgeries before he came to us, but we've seen pictures and heard the stories. it's an easy surgery but there are stitches to be careful of. one thing they did was put arm restraints on my son so he couldn't pick at it. he also could only eat soft foods. i'm not sure about the cost, because my son was in foster care, it was paid for. we are having struggles now with sleep apnea and he will end up needing his adenoids taken out soon. as well as tubes in his ears (which he's had since his first surgery) but they need to be reinserted every year. he gets speech therapy once a week, but otherwise, is a happy healthy kid. a lot of cleft kids have trouble pronouncing things correctly, it is very important to find a speech therapist who has special training or experience with this population. good luck.

[specialk4b]

We brought home our 2-1/2 year old son from China in February of this year. He was born with cleft lip and palate. His lip had been repaired in China, but his palate was repaired here just about a month ago. I'd be happy to answer any questions you might have about what it's like to parent him through the surgery.

You can check out our blog at ladmans.blogspot.com for some of our story.

[Lumpkin]

Cleft lip surgery is a cake walk... oh wait.. maybe not I think it's more terrifying and trying on the parents.

Seriously, they can do wonders these days. Beware that surgery is normally done in stages, and you could have 3+ surgeries even for a minor cleft repair. Surgery should be covered by your insurance, as it's not considered a purely cosmetic surgery.

However, as mentioned, you may want to have a full medical workup, as the developmental timeframe that is affected at the same time as the lip/pallete can also affect several other developmental issues.

[Perfect7]

My sister, now 30, was born with cleft palate and lip. She had about 3 surgeries when she was younger and always talked a bit "nasal" when we were kids. She was difficult for others to understand, but not for family members. Her nose was also a little flat. She also had multiple ear infections and tubes in her ears, and her ears looked smaller than normal. She's still hard of hearing to this day, and was prescribed hearing aids that she never wears. But she's a beautiful woman with 3 children of her own and no longer talks with that nasal sound. When she wears lipstick, which she does religiously, you can't see the slight scar on her lip. Males hide it with a mustache later. Speech therapy was a must for her growing up. She also had some dental problems with her front teeth that were straightened out with braces. My sister also had the coolest way of squirting the food she had just eaten out her nose. We all tried to do it, too, but couldn't. After palate surgery, she couldn't do it anymore. They say this isn't hereditary, but her oldest child was born with a cleft palate (not lip).

[Perfect7]

I forgot to add that the Shriners paid for 100% of her surgery, and the Ronald McDonald house provides free lodging, meals, and transportation for families near the hospital.

[mumofone]

Actually, cleft lip/palate is hereditary.

My youngest child was born with a unilateral cleft lip. Palate is fine. There are birth family members with a cleft lip as well. Surgery was done at 6 months, and the surgeon did an amazing job.

Speech is an issue, but we do receive speech therapy once per month. We have to keep a close eye on his teeth as well. Braces will be in our son's future for sure, although they do look fantastic to me.

We do appointments usually twice yearly at the children's hospital 4 hours away so that they can keep an eye on his teeth. He also had recurring ear infections and is now on his second set of tubes.

I wouldn't hesitate to adopt another child with a cleft.

Hope that helps.

[cassieopeasw]

I am not the adoptive parent but my son does have a bilateral cleft lip. His is very severe and he also has other health problems as well. As for lip repare surgery, he has had 2. The first was to close his lip and the second was a touch up so he could close his mouth right to talk ect... he also has:
cleft palate
small jaw
heart problems, small airway
elisoficilia esoloph. or EE
craniosinostosis
I can send you some pics if you are interested, my email is: captivesouls@hotmail.com or you can see pic on myspace @ MySpace.com - <>< SheL. - 29 - Female - MILTON, West Virginia - www.myspace.com/cassieopeasw . I hope this is helpful. All kids need a loving home and the diserve it! Thank you for being willing to open your home and life, you will be blessed.

<><SheL.
Oh, Dr. Gordon at Cincinnatti Childrens Hospital Hospital has done all of his plastic surgery, and he has done a great job!