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Pre Implantation Genetic Diagnosis for VHL

Vhl_pgd_girl
0 Recommendations

Hi
Has anyone else out there had PGD to prevent VHL passing on?
I'm due to start in a few months and an old fear is rearing its ugly head as I have recently opened the flood gates to find other people with VHL and am shocked at the results.
Is it fair for me to have a child when I have so many probable surgeries ahead? I have a great partner, family and friends but a child will always need it's mother and there are sure to be times when I am not around or worse. Is it fair to put that pressure on the child and those around me?
I'd love to hear your thoughts.
I'd also like to know if anyones problems were accelerated during pgd or pregnancy as I've been warned that is a possibility with all the hormone activity.

Thank you

Explore topics in this discussion:

Surgery Pregnancy

11 replies

larryinpa

Hey!
To have children is a serious question, for sure. But in my mind it is NOT irresponsible to do it after you know you have VHL. You are already taking care of yourself, and plan to live a long normal life (outside some expected treatments). Your children can have the same normal life by monitoring. Plus you have a 50% chance each time of avoiding the gene defect. Plus there is a strong chance that medical research will be able to cure the problem in our lifetime :)

We have 4 wonderful kids...2 with VHL. Both finished college and are off and running in their lives, but getting screened for tumors. If children are important in your life, I say go for it!
Larry

Vhl_pgd_girl

Hey Larry
So glad to have hooked up with you, thanks.

I know you're right, I just feel guilt is one of the worst things associated with illnesses like this, I feel so bad for those around me when I'm unwell and the worry they go through, and to do that to a child seems worse.

But the great thing about PGD, although the success rates are very low, is that if it does work the child is 98% guaranteed not to have VHL which is why I chose that route.

Tweet you soon :-)

jdwilli09

Hello,

My wife and I have just gotten pregnant using PGD/IVF. She was implanted 3 weeks ago and did a couple weeks of bed rest then we went back to have a pregnancy test and it was positive. We go in on wednesday for an ultrasound. We got pregnant on our first try. Out of the 9 viable embryos that were tested 6 were unaffected and we implanted 2(no octomom situation here). From what I understand is that if you are doing PGD, but you have healthy reproductive systems you have much better odds of getting pregnant. From the time we first contacted the facility to being pregnant was 10 months.

I didn't even know that PGD existed until my wife found it on the internet. I would have never had children otherwise. I understand what you mean about the guilt. I've worried about that too. But I also know that I am going to love my children so much and give them a great home, I don't feel like an occasional surgery is going to be so bad.

Good Luck with everything! Feel free to contact me if you have any questions.

Vhl_pgd_girl

Wow, thats wonderful, congratulations! I know you still have a long road ahead so best of luck with that! So great to hear it worked out for someone, and first time! It's taken us 4 years to get to a stage where we are ready! Our health system is very slow in the UK and as we also applied for funding there was appeals and reapplications via diffirent consultants until we got it. Do keep in touch. Do they recommend the best rest to increase your chances? My job is pretty demanding so this is a concern but I need to keep the income up as long as possible, if possible.

oliveoil79

Hi my name is Angela and I have a beuatiful 3 yr old, I was dx 2 yrs after he was born, I feel the same way as you, I am pending to to PGD waiting on my insurance. I feel I have this child and I am blessed, though he has not been tested either way he is the love of my life. But I have this empty feeling that I want another one I feel lost. I have guilt that I wont be able to care for them if I do get sick but and I being selfish, it is a hard decision and I think only you and your spouse/partner can be the only ones to make that decision. Keep me updated I would love to hear your progress.

Vhl_pgd_girl

Hi Olive Oil!

I've pressed foward with PGD. My partner is fully aware of my concerns but we decided together that its what we wanted to do. I've started the treatment which is just a spray for now to stop me producing eggs, the injections start next week all being well, and then I have two weeks off for the ciritcal bits. I'll let you know how we get on and if I'd recommend it!....

jdwilli09 - hope you're doing well.

Take care

oliveoil79

Thats great to hear! Good luck and hopefully it will take the first try!

Vhl_pgd_girl

Hello

Just thought you'd like to know I am pregant with a non VHL child! It's very early but this is further than I expected to get on our 1st try! At this point, whilst I am full of optimism that everything will go fine with the pregnancy, I am glad we went through with the PGD! Out of 9 fertilised eggs only 3 were confirmed as not having VHL.

Angela - have you come to a decision about expanding your family?

x

jdwilli09

Hey,

Congratulations!!! Thats awesome. Hopefully everything will continue to go smoothly. That's really great. I posted in the other PGD thread, I dont know if you saw it. Suz is 24wks along now and we are having a daughter. We've decided to name her Allison Grace. I'm so happy for you guys. Just wait though, the anticipation just keeps building. You just get more and more excited as time passes. Congrats again!

mountaincindy

Hello- I am a wife of a VHL patient and we have two beautiful children (7 & 5) that have not been tested yet, but will be soon. We are pregnant with #3 and will find out in the next two days if baby girl has VHL. Wish us luck on that, but regardless we will love her and care for her. Daddy didn't want me to continue the pregnancy (unplanned) but my thoughts are that if we gave our other two a chance at life, this little girl is getting the same chance. Stay tuned.

joyceg98

We certainly do wish you luck. Having loving parents is the best thing you can give to a child.

Love,
Joyce

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