You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org.

This one is about: Genetic Counseling


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****   GENETIC COUNSELING   ****

> We have heard that "genetic counseling" can be used to determine if our 
> future children will likely have a cleft. What is involved with this 
> "counseling". Is a family history required for the "genetic counseling" or 
> do the take a DNA sample other type of testing from us?

Genetic counseling consists of a complete medical history of yourself, your wife and any biological relatives (including anything that could be considered a birth anomaly - including any miscarriages, etc.); blood 
work-ups; physical exams, x-rays, and a close look at your baby's condition, including many things that may seem totally unrelated to the cleft. They will also want photographs of you, your child and other biological family members (looking for possible genetic condition that may have gone undiagnosed.) The more information they have, the better estimate they can make, and yes, your family's medical history would help.

When all is said and done, though, at the very best, genetic counseling will give you only a probability ratio. They cannot give guarantees. And for those families who were told that there was a 5% chance of conceiving another cleft affected child, that 5% may as well have been 100 when their second child had a cleft. Even when you have all the information available to you, it's still basically a very educated guess.

> I imagine our cleft doctor team could set us up with a geneticist, but I am 
> first interested in hearing if anyone has opinions about their visit.

Most teams either have a geneticist on the team or have access to a geneticist. Most parents are automatically assigned to the geneticist at least once, but on some teams the parents have to ask.  When we brought our 
Joey in for his first team visit we were surprised by a phone call a few days later telling us that they wanted us to see their geneticist. I asked them why, and the lady said, "To discuss the genetics involved in your children's clefting.' I said, "Why are we going to do that now?" and she said, "For one thing, in case you want to have other children." I laughed and said, "Did you look at my sons' birth dates?" and she said, "Oh, my, there must be a typo here.  We have them born here in the same year, two months apart." I said, "no, it's not a typo. They are both adopted. Do you still need to see us?" And a very embarrassed receptionist made her apologies and hung up. (Maybe I should have listened to her. We had another child, and she had a cleft too. ;^) [note Jessica, third child is also adopted.])

> When it comes right down to it, if we decide to have another child, I 
> don't think we are going to be scared away by a high probability of a 
> cleft. Amy has taught us that it is not something to be afraid of -- 
> just something to deal with.  However, I think it might be nice to be 
> better prepared (mostly emotionally) in case the probability is high...

I couldn't agree with you more.  It's not such a tragedy that my kids are here. They have the extra challenges of clefting, but they are beautiful, wonderful little miracles and I am so filled with love for them. In choosing to accept Joey's and Jessica's referrals, having already experienced the joys of parenting Jacob, the cleft just didn't even seem to be a part of the equation.

Joanne Green
Wide Smiles


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