on mamapedia that has a child(ren) who were born with cleft lip and/or palate. I am having a hard time finding online support groups etc for parents of children with clefting issues. So, do you have a child that was born with a cleft? a grandchild? niece? nephew? cousin? anyone, anyone.......Bueller, Bueller??? LOL on that last part. there was a movie question I saw earlier so it made me think about "the good 'ol days"
just lookign to connect with another parent hopefully, but really would just like to know someone who can relate somehow.
TIA
Thank you ladies!!!!!!!!!!! as some of you know, I have 3 sons. Ian is 2 1/2 and the twins, Conner and Sean, are 9 months old. all 3 of them were born with bilateral cleft lip and palate. Ians' was the most severe, Conners was not as bad as Ian's and Sean's isnt as bad as Conners. I am just getting super nervous and emotional right now because the twins have their palate repair coming up in late november....4 days after their first birthday. we have already went through it with Ian who had his done after his first birthday as well. so we are prepared, we know the drill so to speak. but knowing that your child is coming up on going through a lot of pain and suffering is never easy. They have the best surgeon and craniofacial team we could ever ask for. I just hate that my babies have to go through this. I know, that when it comes to birth defects we really do have it "easy"...I know how bad it could have been. I have spent so much time down at the childrens hospital, I have seen what some other kids have to go through and so I am grateful that my boys are healthy other than their clefting and the issues that come with it...the hearing loss and the speech issues, and the feeding issues, and the scarring they will have for life etc...sorry, I know I shouldnt go on like this because so many other kids have such bad issues....I am just so sad for my children.
S.L.M.>>>this is from the March of Dimes web site: How common are oral-facial clefts?
About 6,800 babies in the United States are born with oral-facial clefts each year (1). This number refers to isolated oral-facial clefts, meaning clefts that are not accompanied by other birth defects. Isolated oral-facial clefts are among the most common birth defects in this country (1). About 70 percent of babies with oral-facial clefts have isolated clefts (2).
About 4,200 babies are born each year with cleft lip/palate (1). This birth defect occurs more often among people of Asian ancestry and certain groups of Native Americans than among Caucasians. It occurs least frequently among African Americans (2).
http://www.marchofdimes.com/birthdefects_cleftpalate.html
and according to cleftline.org it is one of the most common birth defects in the US. my OB said roughly 1 in 700 to 1000 babies are born with cleft lip/palate, dont know if that falls in line with the other stats or not.
So, Thank You again so much for all of your answers!!!!
My daughter had a submucous cleft palate (only on her soft palate). Compared to many a cleft lip/palate hers was quite mild. It has caused her some big speech issues...to go along with being hearing impaired:-) As well as other health issues she is dealing with.
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I had a baby in my daycare for a short tme with a cleft lip, but she also had many other physical problems, and they were way beyond my ability to care for along with a few other toddlers. She was a sweet little thing, but so difficult to bottle feed. We did go to dropper feedings for a while and she would still have a tough time getting food down, instead of up her little nose. So, I send you giant hugs for all you go thru and all the effort you put into taking care of your children. Little Em is now about 12, and has a feeding tube so its not as much a struggle like it was before. I hope you find others to talk with and still keep chatting it up here with the rest of us too.
http://www.dailystrength.org/c/Cleft-Lip-Palate/support-g...
http://health.groups.yahoo.com/group/cleftclub/
Here are two support groups I found just doing a Google search. I'm sure you could find more.
Like I said before, if you ever want to chat with someone whose been in your kids shoes, just give me a holler. I think it's great that you're looking for other mamas to help you through. That makes you the best mama for your boys!
*hugs*
The only relationship I have with anyone who has or whose child has a cleft palate is one of my best friends who adopted a son from China last year. He was 2 when they got him, and he has a cleft palate. They fixed it in China, but he has to go through several surgeries and procedures over the years as he grows to make it okay. He has one coming up next week I think (he's 3 now). They take him to a speech therapist, although I don't know how much speech delay is due to the cleft palate and how much is due to never hearing anything but Chinese until 2 and then suddenly hearing all English. Good luck to your and your child! With the right corrective procedures and therapy, I think everything will work out well.
I don't know what the stats are for how many are born with Cleft issues. But I've never known anyone in my life to deal with this. You are the first person I've corresponded with that has this issue. I'm sure this time in your life is stressful. But I'm so glad that the doctors can handle these things :)
My grandson was born with a cleft lip and palate. he is almost 11 now. Is in the process of having his palate stretched with a retainer/spacer. he will be having surgery at schriners hospital this winter.
I know 2 little boys that were...but their moms fall into the acquaintance category.
My son was born with a cleft lip only. He has had had 2 lip and nose repairs. One when he was 4 mo. old and one at 5 years old. He is 6 now. I know it has to be so hard with a cleft palate too.I have a friend that had a cleft lip and palate and he is 30 now and you can still hear it in his voice but he sounds and looks great!
I know of a family that has a daughter who was born with a cleft palate. I don't know them personally (the little girl is the niece of a classmate of mine from hs), but I could see if I could somehow get you in contact with them.
My son was born with cleft lip and palate. His name is also Connor! He is six years old and in kindergarten. He will be undergoing palate lengthening surgery in November for VPI. Connor is seen by the cleft team at St. Louis Children's Hospital. We are located in Springfield. I know a few other moms in the area who have children with clefts. The best resource and support for families affected by cleft lip and palate or other craniofacial anomolies is www.cleftadvocate.org or www.ameriface.org. Same organization, two different websites. These two organizations merged a few years ago. Great information. Wonderful way for families to connect on the Family-to-Family Connection. You should check it out. Feel free to send me a private message if you ever want to talk. :)
