PGD

hopeful · Post by **hopeful** » Fri May 27, 2005 5:36 pm

Hi everyone

Just wanted to ask if anyone else out there is going through PGD? I have a gene that if passed to a male baby is likely to result in renal failure and we have been through two failed cyles of IVF with PGD to hopefully have female embryos replaced.

This is a pretty contraversial treatment and we have struggled with the morals etc from day 1. Our most recent treatment raised some alarm bells about the possible risks we could be causing by having a cell removed to be biopsied. There is very little info out there that I can find??? the hospital says that there are no 'known' risks but the sample size is currenlty so small....

if anyone has any info it would be much appreciated

Julesxx

ogr1 · Post by **ogr1** » Fri May 27, 2005 6:09 pm

i am sorry buty i dont know what pgs is..

i think your reasons for trying to have a daughter instead of a son
are very valled..

i would do the same if i could..
i wish i could be of some help....
i dont think that you are doing anything wrong by making sure you dont have a mc...

hang in there and do what you need to do..
after all it is you that will be going threw this and i wouldnt tell anyone if they where going to have a problem with it..

i dont know anyone that wouldnt do what they could to make sure they had a healthy baby...

hopeful · Post by **hopeful** » Fri May 27, 2005 6:28 pm

Hi
maybe I should explain better.

PGD (pre-implantation diagnosis) is done to prevent babies being born to families wit hhigh incidence of fatal condidtions, it has had loads of publicity because of 'designer babies' but in the UK, the HFEA regulates so that there has to be sound medical reasons for the treatment. A cell is removed when the embryo is at 8 cells and biopsied to check for the condition likely to be carried. Any embryos that are considered unlikely to carry the gene are then the only ones that can be replaced, pretty much at least halfing the number of embryos available for transfer.

We are concerned that removing a cell may cause some unknown health problems and whilst are trying to avoid a renal failure in our baby many cause some other problems and would feel awful and never forgive ourslevs for doing that.

Julesxx

lumi · Post by **lumi** » Fri May 27, 2005 6:43 pm

Jules

I really hope that you get the baby you are waiting for. We are all in the same situation - not being able to have a healthy baby naturally.

I think we all have to explore the moral issues surrounding IVF when we approach treatment. Although I am VERY against designer babies that is not what you planning. We have an educated society that should be able to distinguish between the two.

Best wishes

Lumi xxxx

ogr1 · Post by **ogr1** » Fri May 27, 2005 8:16 pm

lumi very well put.

i dont think you are doing designer babies eather..

i have learned threw ivf that i have no right to say what is right and what isnt...

i know 10 years ago there where so many people against ivf and alot are still against donors..and i am very thankful for both..

thank you for saying what PGD was..
i put that on the abrevreation post...
i do think it is important for people to know that it does have a good reason to use this.. i know if it would help me to have a healthy baby i would in a heart beat...

good luck to you..

hopeful · Post by **hopeful** » Sat May 28, 2005 11:41 am

Thank-you for your support

i had three uncles who all died because of this condition and I so much want a family but don't want to watch someone else I love die.

When did life get so tough??

Julesxx

lumi · Post by **lumi** » Sat May 28, 2005 10:12 pm

Jules

Do you have any information on chances of causing problems? ICSI (which I had) is still fairly new compared to IVF and we have been told there is an unknown chance of problems developing in a child later in his or life (particularly related to fertility). So in a more minor way, we have dealt with a little of the same thing.

I think that once you have explored and asked all the questions regarding abnormalities that may develop and come to terms with the risk factor then you can concentrate on the treatment, if that is what you decide (everyone here will be there to help!)

We are all facing the unknown, but I am sure the first IVF patients felt just the same 25+ years ago and look where we are now!

Take care and hope you can move forward soon.

Love Lumixxx

lumi · Post by **lumi** » Sat May 28, 2005 10:20 pm

I so sorry! I have just checked the May thread and realised you have had treatment.

I am sure you are doing the right thing and hope you can move on soon. I dont know if this is your first go, but it does get better and you can find the strength for another try.

Love and hugs Lumi xxxx

toto · Post by **toto** » Tue Aug 16, 2005 2:38 am

Hi Hopeful,

Your post caught my eye, since I'm also looking at PGD to avoid a genetic condition. I'm not sure if you've made a decision yet or not... I've also been looking at literature about adverse side effects of IVF. I haven't seen any references to definitive studies with findings about negative outcomes -- most say something to the effect that there is 2x the liklihood of major birth defects with IVF than regular conception, but they're unable to disentangle this from the condition of the moms-to-be (usually undergoing treatment for infertility- they should study people like us!). Also, some claim to find a link of IVF and the increase of very rare diseases, but the incidence is so small that the liklihood of passing it on to your baby is slight even with increased odds. But I'm not a medical person...

This decision for me has been very difficult since I too am struggling with "playing god" and trying to make the best situation for my baby. I am trying to keep all of the statistics in perspective. I think the best you can do is weigh the liklihood of your baby getting the genetic diease (which sounds awful) against the liklihood of problems with IVF. Anything less than 5% for me is noise. After all, there are a zillion diseases out there, and, as I understand it this baby thing is a leap of faith.

Best of luck with your decision and please, whatever you decide, DON'T LOOK BACK. If anyone else is reading this that is in the same boat please feel free to post. I've had trouble finding others like me out there, although I'm sure there are...

hlloyd · Post by **hlloyd** » Tue Aug 16, 2005 8:00 am

Hi Jules

Just thought I would let you know that some of our city clinics do PGD routinely for older women, those with known genetically linked diseases and for those who have experienced recurrent miscarriages. The research all looks really positive and appears to increase the success of IVF markedly.

From what I can gather, PGD is performed at Blasto stage and the cells grow back really quickly. The biggest risk seems to be misdiagnosis due to lab errors but I am sure that doesn't happen frequently.

Good luck with your decision and I hope this helps.

Cheers
Heather

PGD

PGD

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