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Genealogy, children, PGD Discuss family and preimplantation genetic diagnosis issues

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Old 13-05-08, 12:56 PM   #1
julia
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Default has anyone had a baby with PGD?

Hello everyone, i am new to this message board. I am at risk of HD (my Dad has it) and i don't think i am ready to be tested but we want to start a family, so i have decided to give PGD a go - so at least i can attempt to stop my children going through what i'm going through (well as far as the worries of being infected and about their own children) and stop this horrible disease in at least my family line. At present we are waiting for our funding application.
i was wondering if anyone has managed to get funding? and if anyone has actually had a baby using PGD? i have seen the hdfreewithpgd website which is very useful but i was wondering if anyone in the uk has had any success?

if you have any advice/ experiences to share i'd love to hear from you!
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Old 16-05-08, 12:55 PM   #2
myrna
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Default Re: has anyone had a baby with PGD?

Hi Julia,

Sorry you haven't had a reply to this yet. Hopefully someone will come along eventually to answer your questions. I don't know of anyone who has tried this route for sure, but if you stick around, maybe someone will come along.

Keep us informed of whether you get your funding & how it goes.
We do need someone around here who will know about this subject & will be willing to share with others like yourself.

Good luck with it all.

Best wishes
Myrna
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Old 16-05-08, 05:28 PM   #3
Elsa
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Default Re: has anyone had a baby with PGD?

Hi Julia,

I am also at risk of HD. I found out my dad had the illness three years ago and I already had two children. We were already considering having our third child when dad was diagnosed so we put it on hold. Then our genetic counsellor talked us through our options and we applied for PGD. We got funding approved, despite already having two children. I think what swung it for us was that I worte a personal letter and asked for this to be read out when they were making their decision. I also talked directly to the specialist budget holder for such decisions and made a personal plea. Living with risk of Huntingdon's has not made me any less pushy!

Remember, they make these decisions on figures and facts, not people's lives so if you can get a sense of who you are and why having PGD is so important across then it will help you. Contact you local authority and speak to someone involved in that decision process.

By the way, I have fallen pregnant whilst waiting for the blood work up for PGD(a lengthy process in itself) so have not actually been through PGD process but am considering my option at the moment. All these decisions are very fraught and I know how frightening it al feels sometimes but being a mum is an important experience. I sincerely hope you are not denied this experience because of HD in the family.

Please reply if you have any questions and good luck

Elsaxx
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Old 19-05-08, 05:15 PM   #4
julia
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Default Re: has anyone had a baby with PGD?

Hi Elsa, Thanks for your response and well done for getting funding- when i asked why they might turn us down for funding the first thing she said was 'if you already had children' so well done! The other things she said was if either of us were over weight or if the female was over 40 or if youíve already had funding for PGD/IVF before. Who did you send your letter to? Did you send it with your funding application? Which PCT were you applying to? (Iím just wondering because i heard it can be a post code lottery)

Congratulations on your baby too- it's funny how nature has a way of making decisions for you sometimes!

Take care and good luck
Julia
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Old 19-05-08, 09:26 PM   #5
Elsa
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Default Re: has anyone had a baby with PGD?

Hi Julia,

You need to contact your PCT and find out who is the commisioner for PGD applications. They may be in charge of IVF budget or, in my case, special cases (I am under Waveney PCT).

Then just write to them directly and make your case!

Hope this helps, let me know if you need any more details

Elsax
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Old 15-02-09, 10:22 PM   #6
tats
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Default Re: has anyone had a baby with PGD?

Reading this thread I just thought I'd get in touch as Myrna said - someone will eventually come along, and so here I am!

OK - in answer to your question 'has anyone had a baby with PGD?', the answer is yes, at the end of last summer, but I have to say straightaway not because of HD but because of a different syndrome. But as there've been only about 1000 babies born worldwide using this technique I thought you might not have that many replies.

Here's our story:
We had a perfectly healthy little girl in 2000 - everything was wonderful,
rosy by name and by nature. She is truly a golden child - bright, clever, beautiful, tall, slim, funny, charming, oodles of confidence, she excels in everything, gives and receives so much love, so we feel truly blessed.
Then we had a little boy in a few years later. Ditto our daughter but in male form, however 1 marked difference, he was much slower to develop. So we thought oh he's just a boy he'll get there eventually, girls are always quicker....
We wanted another baby, only with a smaller gap this time, so along came another boy, again just gorgeous and special but when he followed a very similar developmental pattern, alarm bells started ringing. We asked to see a geneticist: bomb-shell hit and diagnosis made. At the same time we voiced our desire for another child. Were told these were our options:
1. not have any more children
2. adopt/foster
3. take the risk - 50:50 chance
4. conceive naturally, have early testing and terminate if necessary
as we wouldn't even consider option 4, but determined someone was missing in our family, the geneticist said he'd ask around and get back to us. We were fortunate as he came back with option 5: PGD.

So it took a while on the waiting list and getting all the probes etc. done (I was 30 when we started on this journey, 35 by the time I gave birth!) but it was well worth going through all that IVF entails. We were blessed yet again, and on the first cycle of IVF we were successful. Everything went well at all stages - 9 eggs, 7 fertilised, 6 were biopsied but only 1 screened free. This was transferred and fortuantely implanted and I went on to have a normal pregancy, delivering at 41 weeks a beautiful baby girl free from her brother's condition and absolutely gorgeous. She is our miracle baby, and I remind myself of it every time she wakes in the night screaming for a feed leaving me exhausted that it's an honour and privilege to have brought her and her siblings into the world! She's our little gift from God, as they all are, but it's been a long journey behind her conception and birth, ups and downs, and I'd be very happy to share any more info with you if you want to PM me. Good luck on whatever journeys you decide to make, and I hope you are blessed too.
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Old 05-05-09, 09:56 AM   #7
jillie
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Default Re: has anyone had a baby with PGD?

hi julia
very new to this i only joined today after trawling the internet for mentions of pgd. my husband and i have just started discussing the reality of having more children. when i was 5 months pregnant with my son(our only child) my mother was diagnosed with hd. previously to this i was not aware it existed in my family. i would be interested to know how the things are going for you and if you have managed to recieve any funding.

i am also keen to hear from anyone who has had children naturally knowing they run the risk of carrying hd as this seems to be the option my husband favours.

good luck whichever way you decide to go julia

jilliexx
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Old 22-05-09, 12:50 PM   #8
tabbykiwi
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Default Re: has anyone had a baby with PGD?

more shockingly

we were told that the baby is tested at 3months and if positive for HD , termination was compulsory!!!

this really upset us , PGD was the next option but very expensive and raised other issues like if i developed HD, that made the testing a reason
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Old 22-05-09, 01:02 PM   #9
DH
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Default Re: has anyone had a baby with PGD?

Quote:
Originally Posted by tabbykiwi View Post
we were told that the baby is tested at 3months and if positive for HD , termination was compulsory!!!
What?!? Who told you that? That's outragous!! Whilst I'm against people "taking a chance" that they can have children free of HD and I'm also very strongly pro-choice, to suggest such a thing is disgusting! Compulsory? This isn't Hitlers Germany - do they realise that?

If you have been told that termination was compulsory then you need to report that person very quickly as high up in the chain as you can. They need to be struck off then taken outside and given a slap.
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Old 05-06-09, 02:47 PM   #10
LittleS
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Default Re: has anyone had a baby with PGD?

I have also been told that if I get pregnant and want to test if the baby carries the gene for HD that you have to agree to have the pregnancy terminated if it's positive. It's very sad especially for those who like me want a family but are HD positive.
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