Cleft Lip / Palate Support Group

i have three kids and only my middle child was born with cleft lip. i would just talk to your doctor about it and check out the family history really good. I remember being a little worried when we found out that we where going to have a third child but everything turned out fine.

Well that makes me feel better. My problem is that I am adopted and I have no idea what my medical or genetic background is. My doctor said that we will have to wait and see, but I keep reading all these horor stories on line which doesn't help. Do you know what the causes are? I have read a million different things and it seems that everyone has a different answer.
Thanks for responding.
Melissa

Hi Melissa,
How did it go with your firstborn? Did things turn out alright? I'm only asking because I get the feeling maybe things didn't go so well? There shouldn't be any horror stories about Cleft Lip/Palates, at least not here in the USA, unless something went horribly wrong during an attempt to fix the Cleft.
I was born with a Cleft Lip/Palate among other birth defects 22 years ago & I'm fine. I've had 63 surgeries (not just due to Cleft), but my surgical team is great! I went to a mainstream school, graduated 6 months ahead of my class. I turned out just fine. (smile) My speech is really good to.
I'm not saying that it isn't difficult to argue with school officials about what your child needs, because they can be pains. But nothing should be upsetting you that badly. I'm not trying to be insensitive, I'm concerned about what you're reading & from where & what exactly has you so upset/worried. So please don't think that.
Anyway, I'm a member of
www.cleftadvocate.org
They have a family to family connection page where you can sign up & get emails from other cleft affected people as well as parents of Cleft Affected kids.
Also the CleftAdvocate website has a huge amount of resources that you can check out as well.
Please feel free to write me back & check out CleftAdvocate.

What I know of stats is that Hispanic families are more likely to have Cleft Affected children then Caucasians. There aren't any stats for African Americans that I've been able to find.
Aprox. 600-650 children are born with Clefts per year.
If you have a child with a Cleft, the chances of having another Cleft Affected child do go up, but I do not have exact numbers.
As the person above me said, just keep checking back with your doc.
I wish you the best & feel free to contact me as I said.
Michelle

I was young and just started college when I found out I was pregnant. I knew that there were families out there like my parents that couldn't have kids so I signed up with an adoption agency. As soon as I found out that she had a cleft lip and palate I let the potential adoptive famliy know and the response I got was horrible. I went through 6 different families. I didn't know much about clefts, however based on others reactions it scared me pretty bad.
When I was having the ultrasound, the tech put her hands over her mouth, said "Oh my God" and ran out of the room to get the doctor. When he came in, he said "Ya your right, it's unfortunate."
I had no idea what was going on, only that the fear of God was put in me.
I did find a wonderful family, the mother was a nurse and the father an accountant and they make great parents.
I am 27 now and my husband and I are expecting our first. I know that clefts are not a horrible thing, it's just the experience that I had that scares me. I hope that makes sense and thanks for sharing your story.
Melissa

Mellissa,
I have a three year old son with a cleft, I also have a one year old with no problems and I am six months pregnant and the ultrasound shows no cleft. Clefts do not run im my family or my husbands we were the first of anyone in our families to have a baby with a cleft. I was told that everyone has a 6 percent chance of having a baby with a cleft, and that I now have an 11 percent chance. I know a man who has a cleft and two of his brothers four children have clefts. I also know a women who has a cleft and three of her five children have clefts. I know two other families like myself with no family history of clefts and only one child per family has a cleft. It seems to be more commonly repeated if it runs in your family. I hope I helped.

Hi Melissa,
I appreciate you sharing & I am truly sorry. It appears that there's still a lot of ignorance surrounding Clefts. I guess I shouldn't be surprised though. We were talking about that on one of the forums, & someone else asked how was it that Autism is all over the place & Premature Birth is discussed by the March of Dimes, but noone talks about Clefts? And I went to the website last night to check my facts, it's 600 babies that are born per year. And the stats that I posted for Hispanics also apply to people of Asian or Native American descent.
Anyway though, I hope your baby won't have a Cleft, but if that does happen, please remember what I posted here & feel free to contact me. My heart aches just thinking about how you & you're daughter were mistreated until you found a good family for her.
As I said, I went to public schools & all, I was punched, kicked & spit on, so I know the general feelings of pain & negativity that come with it. I also had a Bilateral Tessier Cleft or Facial Cleft. So that's why I was a target. & that's where most of the 63 surgeries came from. (smile) It's been quite an interesting road, but most of the time, I'm positive that it's been worth it.

If you want to see me, (picture & video), you can visit:

http://www.mlive.com/flintjournal/...

Again, thank you for sharing, & I'm glad your baby girl ended up with a good family. (smile)
Michelle