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Genetic testing ivf (PGD) - what should I do?!

(8 Posts)
user1482069339 Sun 18-Dec-16 14:30:24

I'm looking for some advice. My OH carries a serious genetic condition which only gives us a 50/50 chance of having a healthy baby.
I do not want to risk the odds of a natural conception because it cannot be tested for until the later stages of pregnancy and I am not prepared to consider / carry out a late termination.
We have spoken with our doctor and she is happy to put us forward for IVF with PGD.
However I am struggling to come to terms with how invasive physically and mentally the process will be.
A less invasive option would be to go with a sperm donor without a known genetic gene but this would of course sacrifice carrying on my OHs amazing characteristics for a stranger and I'm not sure how I feel about this. This is the man I fell in love with and wanted to have babies with.
We are both late 20s & don't currently have any children so we are eligible for ivf and pgd through the NHS. Although if we have a child by donor we would not be eligible if we would like to carry out ivf for a 2nd child so our decision now will impact how / if we later expand our family.
Does anyone have any thoughts on this? Have you had to make a similar choice ? What should I do?!

ellei Sun 18-Dec-16 14:49:03

I don't have personal experience of going through pgd but I know a little about this situation. It is a very tough decision for you but you don't have to choose yet. The initial pgd consultation is no-obligation so why not go along to it and then talk to your dh about what you have both heard at the appointment. Do you know how he feels about things? You haven't said in your post. I know it is you that will go through most of the difficult things, not him, but the two of you have to make the decision together and you can't unless you have talked it through properly with the fertility consultant and with each other afterwards. You are young enough that you are not trying to beat the clock so you have time to spend a few months thinking it through. If one of your worries is the invasiveness then maybe it would help you to ask the pgd team to put you in touch with a woman who has gone through it - or at least who has been through an ivf cycle - so she can talk to you about what it is really like to go through it.

Another thing, if your dh's condition is suitable for pgd then I don't understand why you say it can't be tested for until the late stages of pregnancy - can't you be offered a cvs? that can be done at 11 weeks and depending on the test, you might have the results by the time you are around 12 or 13 weeks. Have you checked this with your obstetrician? Unless you mean that you wouldn't consider a termination under any circumstances.

user1482069339 Sun 18-Dec-16 15:38:28

Thanks for your reply. My dh is very supportive of whatever path I decide, including using a donor but I know that we would find it difficult to agree on a termination under any circumstances.
We will definitely take what you say on board and speak with our genetic consultant / counsellor in the new year.

Sweetdee6 Fri 17-Feb-17 15:33:45

Hi!

My DH and i are going through IVF with PGD right now. I am 28 and he just turned 30 so the success rate is higher in our age group. He has a genetic disease with a 50% chance of it being passed on and we absolutely don't want to risk it.

We are doing it all through Guy's hospital who have been amazing! We were given 3 options for pregnancy with my DH. Natural pregnancy (and essentially hope for the best), natural pregnancy with a 3 month genetic test on the foetus - if positive we would have to terminate, and then IVF with PGD. From those options it was clear that we both wanted to do IVF with PGD - it made the most sense, although it is the toughest one.

However we are ready and have started this journey together with a goal of ultimately ending up with our very own baby (or babies!) and potentially have frozen embryos left for future babies (very hopeful on that one!)

We are starting our stimulation injections tonight and we are very excited! We know we have to be realistic about the success rate with this method BUT we can only hope that it all goes well our first time and by June we can be pregnant. If not, then its back to the start for round two!

I hope this helps, if anything getting someones personal experience!

xx

lightgreenglass Sat 18-Feb-17 20:53:58

Hi,
I've been offered IVF with PGD from my doctor. I have a inherited disease with a 50% chance of passing it on, but it's not something that has affected my life or lifestyle. I take medication, and will need a transplant in my 50s. Like you I am in a dilemma about whether to accept it or not. I already have 2 children and the NHS won't test them till their in their 20s for my condition. I've decide to go to meet the PGD team to talk about it and then I'll make a decision. Swinging towards no for the same reason as you, that it's so invasive but obviously the disease you're referring to is much more serious than mine.

Cocktails30 Sat 04-Mar-17 17:51:25

Hi,

I'm not sure if you're still around. Myself and husband are considering PGD (going to ask our geneticist if it's possible and for a referral later this month) as we have a 50/50% chance of having a child with the mutated gene my husband carries.

I don't have issues with PGD, other than it's a lot of hard work and very clinical and draining. More of my issues are with I'm not sure whether I want children and I always thought we would let nature takes its course, but now that isn't really an option! Although I guess in a way it's still the same thing as the success rate is slim. It's a tough decision as you have to actually say I am going to try and have a baby now.

Cutesbabasmummy Sun 05-Mar-17 20:41:50

Honestly I think you are really lucky. I have a genetic condition but it's one of the 20% that they haven't identified yet. So testing wouldn't help as they wouldn't know what they were looking for. I was 1 day too old when I saw my gp for an ivf referral. 35 is the cut off in Oxfordshire and I had just turned 36. We probably could have had a baby naturally- dh has no issues with his sperm and subsequent scans showed I have lots of eggs. But we decided against it. I couldn't bring a child into the world knowing it would face years of prodding and poking by doctors and lots of surgery. It wouldn't be fair. So we paid £10k for ivf with a donor egg. We have the most gorgeous 2 year old boy from our second frosty cycle. I would jump at the testing if I were you. My son is wholly my boy as I carried him for 9 months and gave birth to him but I'm not sure my dh would feel the same if we had had to use donor sperm

Scottishgirl85 Mon 06-Mar-17 06:38:10

Hi, my friend has a 50:50 chance of passing on a genetic condition. They did pgd ivf at Guys (second round worked, NHS funded) and then went privately abroad for their second (worked first time). Only you can decide how important it is to have a child genetically related to you. Agree it's very invasive, I'm about to embark on ivf for mfi, which feels weird as in theory there are no issues on my side. I find it helpful to cast yourself into the future and think of all the possible options, and decide if you'll have any regrets with any of the routes you may choose. Good luck xxx

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