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IVF with PGD experiences

(4 Posts)
ElphiasDoge Thu 10-Oct-19 14:09:15

Just wondered if anyone would be willing to chat/share experiences of IVF with PGD.

DS1 has cystic fibrosis. We would in theory be eligible for 3 cycles of IVF with PGD at Guys in London. Haven’t officially seen genetics or had us tested yet but the likelihood is that we are both carriers. Referral has gone off.

Has anyone done this? We live 2 hours from London. How arduous was it? Were people very judgemental? Even if you didn’t say they’d know you’d either done IVF with PGD or gambled. I can imagine being judged for either.

We took 2 years TTC DS but no cause ever found, natural conception just before we were about to do IVF paperwork.

I loved being pregnant, even loved my labour. I love DS with all my heart although my heart breaks for him and I feel horrible for wishing he was different sometimes. Always imagined having more than one.

I do worry about having another, about the way their relationship would work - with DS needing physio and medications and a high fat high salt diet. Would the other one be jealous and resent the attention? How would we manage food and dietary differences? Would we be wrong to devote less time to DS? Less time for him, money spread thinner. It’s also a bad environmental decision. We could screen for and not implant CF, but of course any other child might have another medical problem. Something could go wrong for me in pregnancy or delivery leaving DS and DH alone. Chances are tiny but I feel like we’ve been burnt with bad luck and these things do happen. It’s a risk in any pregnancy. But then I do also drive which is a risk too!

DS might well die younger so a potential sibling would likely have to endure the death of his/her brother. How would DS feel knowing we’d deliberately decided to make another one that isn’t like him?

I love having siblings but I wonder if wanting another is more selfish on my part. I want to do the baby thing again, ideally without spending the majority of the first 4 months in hospital. I’d quite like to be a grandparent. Obviously there are no guarantees on this for anyone and it isn’t something you should plan. I feel a bit bad for having the thought. DS will be infertile but may go on to have kids via IVF or adopt. A subsequent child may not want or be able to have kids of course. I love the idea of introducing DS to a little sibling, of them growing up together. I love the idea of growing and discovering another little person. But would it all be too much?

I suppose a lot of these questions are the same for any second pregnancy.

And then of course we might go through it all and not work. Or go through it all and only make CF embryos. How would we handle that?

Just fancied a chat really! I’ve certainly had one but keen to hear from others!

Latenightthinking22 Fri 11-Oct-19 02:59:17

Hi there.

First off, I'm so sorry for your little boy. But he will have a great life with you as his mothersmile

I don't have any kids yet, but I just wanted to share that DH and I will likely be undergoing pre-implantation genetic screening due to a genetic condition on his side.

I know our case is different to yours, as we don't have any children with the condition. But just thought I'd let you know there are others out there who are/will be going through the PGD route as well!

Personally, I think it is an amazing opportunity. Our genetic condition has a 50% chance of being passed down, and it is life limiting. It presents itself in different forms, some mild, some severe. And for that reason, DH and I would like to avoid the possibility of a future DC of ours from getting it.

We have seen how it affects family members, and we feel PGD is the best step forward for us. Of course, any child born to us in this way could lend up having any number of other conditions. But we feel that since we have the knowledge of one very bad condition, and a way in which to prevent it from happening, we feel it is the right choice for us, and for our future DC.

Wishing you all the best, and I'm sure your son will love having a sibling. And your younger DC will love having him as a brother! thanks

ElphiasDoge Fri 11-Oct-19 14:42:38

Lovely to hear from someone else although sorry to hear of the suffering in your DH’s family. Really hope treatment goes well for you! Have you started the process or not yet?

Ginandtonic31 Mon 14-Oct-19 22:15:07

Hi, I can't answer the questions about a second child but I have gone through PGD and I'm 18 weeks pregnant. I was at Guys but went through s satellite at Sheffield. All my scans were there, I just went to London for collection and transfer. Where are you based? It's a long, hard road but worth it (which I realise now I'm pregnant). I've only been met with a positive attitude towards PGD. People think it's amazing what we've done to try and stop the condition my husband carries and ending it in the family.

Happy to answer any questions. X

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