PGD or No PGD - Are you happy with your decision?

• By jdwilli09
• Posted September 3, 2009 at 4:51 am
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My wife and I decided to go the PGD route. I am the one with VHL and she is at about 24weeks now. There haven't been any side effects other than what you would expect from a normal pregnancy. You have to remember that you would still be having a child the natural way, your baby would have yours and your husbands DNA, you would carry and deliver it yourself. My wife would assure you her heartburn is no different than a woman who conceived without IVF. Other than conception, everything is exactly the same. Plus, you get to have healthy children. When my wife and I married, I was adamant that children were not an option, and they would not have been if it were not for PGD. Obviously, it is a very personal choice whether or not to try to have children with a genetic disease, and then to decide on the PGD route. I am very glad that we did this though. I mean, you do everything you can to protect your children and keep them from harm when they are alive. Now, we have the technology to be able to protect them before they are born. Our daughter, Allison Grace, will be here in December and we can't wait. Feel free to message me if you have any questions. Or, I can get you in contact with my wife if there is anything you'd like to ask her. We'd be happy to share any information we have. I'll put you and your husband in my prayers. Good Luck.

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• By Vhl_pgd_girl
• Posted September 4, 2009 at 10:17 am
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Hi

Firstly jdwilli09 - it's been a while since I caught up with you last - so pleased everything is progressing well - and 'Its a Girl!!', how lovely.

Split2991 - I have VHL and have just had PGD and discovered it was successful on Wednesday and am 4.5 weeks pregnant! You can read on my journal the long path that led myself and boyfreind to this decision. There are many feelings and worries but a few of them will be diff for you as it is me that has the faulty gene and the feelings of guilt were the over riding factor.

The IVF process itself was no where near as horrendous as I had expected but I had a smooth run so I guess that really helped. Out of 9 fertilsed eggs, 5 had VHL, 1 was undetermined and 3 were clear. When I heard this, at that moment, I felt sure we had done the right thing for us. All 3 were good quality so 1 went back in and 2 were frozen. A frozen transfer is much simpler than the full ivf so if we want to expand our family later we have the chance of doing so relatively easliy.

As above, the choice is very personnal. Along the way, I have met many people with VHL and other genetic conditions who decided not to go for PGD (or didn't have that option when they started their familys) and have affected children. Their lives are just as content and fulfilling and many poeples view is that the baby has every chance of developing something else wrong with them even if they are clear of the genetic condition. I totally respect their views and certainly would have considered it if PGD were not an option. There is always the possibility this pregnancy will not progress as it should, we won't be able to fund endless cycles of IVF/PGD so one day we may be faced with the option to concieve naturally, but will cross that bridge if we have to. I'm not sure I would think that avoiding VHL was worth missing out on having children. Like my friend, Larryinpa says, life with VHL is normal, with a few hiccups along the way.

Either way, good luck, and feel free to ask anything.
x

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• By JenM
• Posted September 5, 2009 at 7:53 pm
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I found out that I have VHL when I was 8 months pregnant so I didn't have the opportunity to think about this. We had her tested for VHL and she does have the gene. At first I was devestated but have come to terms with it and honestly rarely think about it.

I've accepted that I have VHL and to be honest, I think it's made me a better person. I appreciate my life so much. I'm taking better care of myself, I'm doing the things I want to do and spending time with the people I love. I'm not getting stressed about the little things because, what's the point. Having this disease has helped me to look at the big picture. It makes me really sad that Sophie will have to deal with this disease but I know I've come to terms with it and I hope she will too. I know I'll need to be a good role model for her as my mom has been for me.

In a way I'm glad I never had the chance to go the PGD root. If I had I would have missed having the most wonderful little person in my life!

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• By pupa
• Posted September 6, 2009 at 8:36 am
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My son is the one an d only with vhl and we try to share his pain and difficulties, You are all so brave and inspiring and always with a smile you have much to be thankful for. I pray that my son can experience the wonder of fatherhood

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• By split2991
• Posted September 8, 2009 at 9:41 pm
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Thanks everyone for your heartfelt responses. We're moving along the PGD route -- we'll let you know how it goes.

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