Looking for people with KFS who have children

[ksuzanne]

My husband has Klippel-Feil Syndrome. His neck vertebrae are fused so from what I have read, it looks like Type I.

I am looking for thoughts and experience from people who have KFS and have had or are thinking about having children. We are looking to have children soon, and his condition is a concern of mine.

There seems to be little information on the web about the defect, and there seem to be conflicting opinions about whether it is genetic or not. Even if it is genetic, I'd like to know the incidence rate.

If anyone has information or resources that I can have regarding whether KFS is or is not genetic, I would appreciate anything. I would also like to hear from those with the disorder who have children or have spoken to a doctor about the possibility of the condition being passed on.

Thank you!

[lindalou]

I have KFS and have 2 children who show no sign of this condition. You are correct about there being very little information about this on the web. I didn't know i had this until after both of my children were born or i would have researched ahead of time. It would not have stopped me from having them though, they are my best blessings.

[rawwill]

I was born with KFS. I did not receive a diagnoses until after I was 30 years old. I always appeared different than others but we just did not talk about it. I even made it through the U.S. Marines. I have three kids and they are all OK. Thank God. It is smart of you to ask of the chances of having a child with this very limiting and unfortunate condition.

[dawneesue]

I was born with KFS and have 2 children who do not have it. My parents do not have it either...guess I was the lucky one I fortunately do not have a lot of the things that go along with KFS. I basically only have cervical fusion,( c2, 3) a very short neck with limited movement and a low harline in the back of my neck.

[suzanneh]

I have KFS and 4 beautiful children without it. While I was pregnant with my first child I really panicked and tried looking for information. The information I found was limited and differed significantly. I saw incidence rates of 1/100,000 to 1/900 to some information saying there is an increased risk if a family member has it to other information saying there is no link whatsoever and that it is sporadic.

Some info said there was a genetic/chromosomal link...others said not!

So...based on my experiences...no one in my extended family has it and none of my children have it. I think it is totally sporadic and spontaneous.

Don't worry! Have that baby!

[Heather S]

I have KFS and have two children. I was diagnosed with KFS type II in 2005. I don't have any noticeable defects outwardly but I am in excruciating pain 24/7 and I am also on pain management. I have multiple fusions from C-1 to C-5. I also have compression on my spinal cord which is the heart of my pain. My children, so far, have not presented with any issues. I have KFS on my mothers side which includes my sister, grandmother and great grand mother who all of a variance of the disorder. None of them have an extreme version of KFS, however. So, do I believe that KFS is genetic.....absolutely!

[kathy2008]

I was told i had klippel feils when I was 23. I have 4 brothers and sisters all have kids and were told by each of their doctors there children would never have this syndrome. 23 nieces and nephews later they were right. This syndrome can not be passed that way. I hope this helps. kathy

[ksuzanne]

Wow. I'm sorry I forgot about this thread! Wow - it has been a very long time!

In the event you get back on here and look, thank you a million for the advice and replies.

We actually spoke with a genetic counselor today and there is still a lot of gray area, which I expected. Even more gray area is that my husband is adopted, which doesn't give us even one clue as to the possibility of his birth parents having the condition (making the potential for him to be autosomal dominant pretty much unknown). The counselor said we could test for a specific gene, but I just don't know.

Your replies really do help and make me more confident that we can have a child without the condition. I know that it is a leap of faith, but I am a major "planner" and want to make a very informed decision before having a child that could be affected by the ramifications of this condition for its whole life. I know that, if we do choose to have biological children, we will just have to do the best we can to do what is right.

Thanks again - it is great to hear from some others in our same boat!