Hereditary?

[DANA]

I was wondering how many people with multiply children have found that they have more than one child with some sort of cranio issue? My husband and I are already discussing another baby. (sometime next year) however we dont want to have to go through this again. So we were wondering what the chances of another child having problems.

Thanks
Dana

[KALEMSMOM]

We were tested genetically and Kalem's case was a mere fluke. We have another non cranio child. Many parents here have other non-cranio babies. Our Dr told us that it is very rare to have another cranio child. I could definetely sympatize your fears, having to go through this a second time around is not something I'd want to do but would definetely do it if I had to.

[Katie]

Usually unless there is a family history or a known syndrome, the chances of having another cranio baby are the same as any other couple (I think it's around 2%?). Is there any family histroy of syndrome realted cranisynostosis in you or your husbands family at all?

[DANA]

No history on either side, as far as we know. Thanks for the quick replies.

[frankiesmom]

I have two kids-first one had no issues(however if she doen't stop squishing her brother she might soon :giggle ), the baby has cranio. No one in family has it, they said it was not genetic...probably bad positioning in womb. Drink alot of water!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I did not...feeling guilty, and I had every test available because I was high risk. Relax and have your baby :hugg

[Jennifer]

My first 2 are non-cranio, 3rd cranio. We signed up for a study and through that recieved some genetic testing on her and me. They did not find anything- just that it was a random happening! We were asked (by my MOM!) if we were done having kids now as we wouldn't want this to happen again.....I thought about it for a while and though it is so hard to go through the surgery and having to hand your child over again- if I had to do it to get another kid as fun and loving as Emily...I would. I'd be scared, but it wouldn't stop me- the joy I've recieved from having her far outweighs the medical issues we've had......I'm done on my soapbox. In the end, it's obviously a very personal decision- the chances are very slim....I'd go for it!

[Melissa]

Our oldest has Pfeiffer Syndrome, one of the syndromic forms of cranio, but our youngest does not. There is no history on either side of our families, either, so they ruled that it was just a new mutation, not an inherited condition...

[DANA]

You guys are great. Thanks again.

I will let you know that my mom is also giving me the get your tubes tied speech. As a side note my 5 yr old is in remission from non hodgkins lymphoma and about 7 years ago I had a late term miscarriage with triplets. That explains why mom is pushing so hard not to have another baby. But I think we are going to try.

[Rhonda O]

Dana, I can totally understand that feeling. Zachary is our first child and was born with sagittal cranio. We haven't been tested but we know of no one else in either of our families that have had any type of cranio. I am now expecting our second child within the next month. I know that we have a very low chance of it happening again, but it is still some thing that I worry about.

[Melissa]

Dana, I know your mom only has your best interest at heart, but you have to live for yourselves. If you and your husband want to try again, then do so. It can be a hard decision to make - we were scared, too, but I didn't want my son to be an only child like I was...I wanted him to have a sibling to grow up with, something I'd always wished for and never had. In the end, it's your decision, and I'm sure your mom will love any child that you have.

As for getting your tubes tied, when the time is right for you, it's a great option. I wanted two kids, and pretty much only two kids, so I had mine tied after Zack was born. The procedure itself wasn't too bad, and I've really enjoyed not having to worry about any 'surprises' since!

[Anna Webb]

Dana, Your baby is beautiful. Sometimes life throws many troubles our way, but i really beleive that we shouldnt live in fear, thinking what if. I too battle with these fears after our daughter was diagnosed with sagittal, and we too have had other major difficult circumstances in our lives. I really think that if your husband and you want another baby you should go for it and live the life you want and try not to let fear set in. All the best!! anna

[saraweise]

it is so hard to go through the surgery and having to hand your child over again- if I had to do it to get another kid as fun and loving as Emily...I would. I'd be scared, but it wouldn't stop me- the joy I've received from having her far outweighs the medical issues

What a fantastic perspective!! You are right on! Thank you!!

[Matthews Mommy]

I have 5 children in total Matthew was born 4th, and he had Sagittal Craniosynostosis none of my other children had it and we have no family history of this it was a gene mutation.

[Zachary]

I read somewhere that it is some sort of new genetic mutation... not seen in either parents or relatives

[Lori]

This is the question of the day. So far, I am told this is not genetic. I am not convinced. I believe maybe they have not looked far enough. I believe it could be a new mutation of the domain of the gene for fibroblast growth factor, located in Chromosome 7 but don't know enough about it. I just want more answers.
I did have another child, she is non-cranio and just so priceless to me. I was told then it was a fluke too. Now my grandson has sagittal craniosynostosis. When I look into this babies eyes, I see his father. Full of life, smiles, giggles, love. Without a doubt these kids have a higher purpose, I just want more information.

[Lori]

Medically speaking... This topic just drives me nuts! It seems every person I talk to or paper I read has a different perspective... none real answers. I found a site that is very informative regarding the different types and new procedures here in the states. Cranio, Sagittal, Coronal, Metopic, and Lambdoidal: http://www.craniosynostosi.net/default.htm.
Also, an outfit in Paris has a lot of knowledge in this area. However, most all of them claim to have done the first surgeries and procedures starting in the '90's. One guy here had this done in the 60's ..?
I have learned an incredible amount in the last month, also even more grateful to this wonder surgeon Dr. Hankinson who helped my son in '84. So, I hope this info helps anyone wanting more medical answers.