Hi,
I'm 33 years old and was diagnosed with VHL 20 years ago, as I was growing up I never intented to have children because I did not want to pass on the disease.
But I am please to say I now have a very beautiful 10 year old daughter. My mum, sister, uncle and two cousins also have VHL and they have identified the vhl gene in our family this meant that when I was 10 weeks pregnant they did a CVS (Chorionic Villus Sampling) test and confirm whether the baby had VHL.
My doctor explained that there was a 50/50 chance of the VHL gene being passed on and once they did the test they were able to confirm that she definitely did not have the faulty gene.
Obviously having the test raises a lot of agonising questions but it does give you options, however difficult they may be.
I hope this helps.
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Having children, CVS test in early pregnancy
- By _RSH-
- Posted March 1, 2009 at 5:40 am · 5 replies
- In Parenting issues
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5 replies
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- By AEckerman
- Posted March 2, 2009 at 12:31 pm
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I have had this discussion with both of my children, and even though they have VHL and have experienced an unusual amount of tumors; they are both very happy and thankful to be alive considering the alternative.
- By beccaloo
- Posted March 2, 2009 at 2:02 pm
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I am also 33yrs. old but was diagnosed only 10 yrs ago. I have 2 sisters and a neice and nephew, all are w/o vhl, thank God. We believe I got it passed through my mom whose father and brother also probably have or had vhl. B/c of all the tumors and problems I've had and continue to deal with we put off having children. I always wanted kids and my friends in college always said I'd be the first one to have a wee one and probably end up with at least 3 or more. Sounded good to me! One of the things that attracted me to my husband was his way with children and he too wanted and wants kids.
We've been holding off b/c of $$ concerns as well as we've been waiting +2 yrs for Soc. Sec. Disability to be approved. We haven't spoken of children in literally years.
The other night under the cover of darkness I asked him about kids and what his thoughts were and plain as day he said, "I've always wanted to have children with you but let's get soc.sec. figured out first. As far as any medical stuff goes, if you can have children I want to go for it and I know she or he could have VHL but I still want to have a baby with you. We'll just deal with it when the time comes, step by step like we've been dealing w/your VHL stuff. Take it step by step, honey and we'll get there."
So hopefully Soc Sec will be figured out soon and my CVS test will come back positive and the ensuing VHL test will come back negative. If it doesn though, we'll handle it step by step.
You moms out there and dads out there with kids who have vhl and "got it" from you are amazingly strong and I'm sure to look to you for my strength when the time comes. :o)
- By marie3
- Posted March 2, 2009 at 9:24 pm
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Hello group. I just have a comment, or two. The decision to have children is a very personal one. I had my son before I knew anything about VHL. Seven years later.....I know alot about it, and we both have it. Would I have decided to procreate knowing I have VHL? Probably not. Today--could I imagine life without him? Absolutely not.
Marie
- By _RSH-
- Posted March 3, 2009 at 3:56 am
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Having children is always a hard descision, there never seems to be a "right time" but having VHL does make it harder and I definitely agree that it is a very personal descision.
Good luck beccaloo!
AEckerman I read your article about Pheo's, it was really informative I've got a couple of the symtoms you mentioned so I'll be talking to my doctors about them. You and your children are so brave and positive you really are an inspiration.
Marie3, I feel the same as you I look at my daughter and could not imagine life without her, but I wanted to mention the test on here because I have read a lot of post from people saying they wasn't going to have children through fear of passing on the disease, I wanted people to know there are options it dosent have to be as black and white as having children or not having them.
The last time I saw my genetic counsellor she mentioned that they was now working on Pre-implantation diagnosis, I'm from the UK and we seem to be a bit behind the USA in terms of VHL research I don't know if it's available there yet.
Lastly one more question, did any of you experience more problems with your VHL during pregnancy?
- By marie3
- Posted March 3, 2009 at 5:16 pm
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RSH,
I think the CVS test gives people more options to consider. I think it's great how far medicine has come. It's frightening having a child that has a disease or a syndrome. It's also scary to have one yourself. If I'm sick, who will care for my child if he's sick? I'm sure there are many different opinions regarding the CVS test. That's why I say that having children (politics and religion also) are very personal things.
Regarding pregnancy and VHL....I never felt better. My allergies and migraine headaches were much better. I felt great. Although, I believe that the hormonal changes during pregnancy is what brought my VHL symptoms to surface. After my son entered this world, VHL entered my life, and his. (Though, VHL would have surfaced at one point or another; I'm a woman and we're full of hormones. ha ha ha)
Marie3
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