IVF with PGD experiences

[ElphiasDoge]

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]

Hi there.

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

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!

[ElphiasDoge]

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]

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

[ElphiasDoge]

Congratulations on your pregnancy! How exciting! We would be through Guys as well but closer to London than Sheffield.

How far in advance did you know what dates you’d need to be there for treatment? How many visits was it? Did you need to do overnights? I presume travel costs are not reimbursed? (I don’t mind, we’re very lucky to be eligible for 3 cycles).

[Ginandtonic31]

Hi @ElphiasDoge

Because I'm at Sheffield I only had to go to London for egg collection (twice) and transfer. I knew 36 hours before I was ready for egg collection and the first time I stayed night before and the night after (Sheffield told me to do that) and the second time again 36 hours before and I just stayed the night before and came home the same day. The day of transfer I knew a week in advance and just went down for the day. Travel costs and hotel etc were all covered by us which I was fine with given what the NHS were offering (and I work in the NHS so I wouldn't take from them anyway).

[ElphiasDoge]

Thank you for taking the time to write about your experiences, it’s really helpful. I work for the NHS too. How did you handle it with work?

[Ginandtonic31]

@ElphiasDoge I was just open with my manager and told him what I was doing and how short notice my appointments would be. He was very supportive and just said take whatever you need. I only really missed a couple of hours a few mornings for scans. The biggest thing was just giving 36 hours notice for a day off but he knew which week that was coming.

[Latenightthinking22]

We haven't actually started the process yet. We're planning it for about 2 years time, as this is when we think we will be ready to start a family.

However, we have spoken to our doctor about this. And my husband has had one blood test done so far.

We have done a lot of research on the process, and have spent the last year really coming to terms with our new normal!

I'm glad we have this time before we start the process to really let it sink in. I was quite emotional, like I was grieving, for the fact we would never be conceiving the "natural" way. I was quite sad for a while thinking about all the fun/excitement we would lose out on by not being able to try to conceive the natural way. It was something I was looking forward to for years.

BUT, I have accepted it now. And we are looking forward to the whole process. I have learned that we can still enjoy it. As I've said, it's just our new normal now.

And overall, knowing that we are eliminating this awful condition from our family, is the most wonderful feeling ever.

Our families are aware that this is the route we plan to take. Both sides support us fully and think it's an amazing opportunity to have.

[Ginandtonic31]

@Latenightthinking22 hello! The only bit of advice I would give is do they know exactly where your gene is etc? I'm only thinking to make sure you factor in enough time if you know you want a family in 2 years. I am currently 22 weeks and this month is 5 years since we started this (but we had to find the gene first). From finding the gene and starting PGD this was our timeline:
May 2017 signed the papers for PGD
May 2017-May 2018 fertility investigations to find out what drugs would work and bloods to build probe)
May 2018 - first round of treatment (only 4 eggs and one embryo made it)
September 2018 - found out embryo had gene
February 2019 - round 2
June 2019 - embryo tranferrred and positive.

So even from actually starting we've taken two years and that's with us being very lucky and our first transfer working. I'm sure the journey is quicker for others. I just wanted to give you something to think about in terms of timing etc.

[GrumpyHoonMain]

I carry a really nasty blood disorder and if DP had carried it too (or a similar one), our clinic would have offered 2 options. karyotyping first to determine how probable it would be that either of us would pass it along - if more than 75% the clinic would have recommended donor eggs or sperm. Or straight to PGD with the risk that entire cycles’ worth of embryos might need to be destroyed. Luckily for us we never got to that stage but we were told it can take up to 9 cycles for a single useable embryo - and while the local trust would have funded 1 complete cycle and then the PGD testing for all the cycles after that, they wouldn’t have paid for the rest of the ivf cycle (which is the expensive bit). So we were looking at a potential cost of at least 60k if we wanted to use our own eggs / sperm

[Ginandtonic31]

@GrumpyHoonMain I think it has changed now. PGD is three rounds funded now. One round is until every useable embryo is gone. And there's no other charges (just prescription charges). That's across the UK now. Not just by area.

My husband carries the gene we are avoiding and it was a 50% chance we would pass it on.

[ElphiasDoge]

@Ginandtonic31 congratulations on your pregnancy!

We saw the genetics team this week. They said we can have a referral whenever we like and with CF the funding is basically automatic but generally officially approved in 6-8 weeks. They said on average a year from referral to positive pregnancy test if successful. For common CF mutations they already have the probes so not the big delays like for rarer things. The only thing that makes us not eligible at the moment is DH’s weight, Guys require the woman to have BMI

[Tmr1989]

Hi @ElphiasDoge.

It sounds like we're at a similar stage to you - we had an initial genetics appointment locally a couple of months ago to find out more about what will be involved. We are probably going to ask them to make the referral in the first half of next year (most likely to Guys). We were told the first go at implantation would be around 8-9 months after the referral, in our case.

Your comment your husband's weight has worried me! I know that I need to have a healthy BMI in order to have the treatment (which means maintaining weight for me as I'm the one with the medical condition, and I'm borderline underweight) but they didn't say anything to us about my husband's weight. When did they tell you that this was a factor? Do you know how to find out your local area's funding criteria?

Thank you!

[ElphiasDoge]

Hi @Tmr1989,

As far as I know Guys don’t worry about the male partner’s weight but it’s a requirement for funding in Wales. They mentioned it at our genetics appointment but I’d already looked it up and knew.

www.geneticalliance.org.uk/information/service-and-testing/how-can-i-access-preimplantation-genetic-diagnosis/

This website has the links for the full criteria for England, Wales and Scotland.

I think we’ve decided on balance we’d like to aim for around a 3 year gap. DS would be more independent both for when the baby is here and being left whilst we go to appointments, he’ll have his free nursery hours so I can have some one to one time with the new baby on maternity, if they both do standard 3 year degrees they won’t be at uni at the same time. If they have gap years or want to be doctors then they will! And gives DH a bit of time to try and lose the weight. Plus can explain to DS a bit better about a new sibling being on the way if it works. I think I’d enjoy that!

It took 2 years to conceive DS so I’m well aware it might not work at all or to our timings. They said you have a year from funding being agreed to proceed and then you need to reapply. And they said they’d do us an appointment to weigh and measure us at the point we ask for the referral.

So I think we’re going to ask for the referral middle-end of next year! So yes, very similar stages, happy to keep in touch.

DH not making huge efforts on the weight loss at present but it’s Christmas, we’ve got a small baby who’s been poorly and had a hell of a year. Not going to push it at the moment! It’s a delicate topic he’s really sensitive about and he’s been wanting to lose this weight for years.

[Tmr1989]

Thanks @ElphiasDoge!

I know exactly what you mean about it being a sensitive topic. Weight loss or any kind of body positivity for men is so rarely talked about. My husband has tried so many things that haven't worked or that he's not been able to stick to. Not helped by the fact that I struggle with losing too much weight. I find it hard to know how best to support him.

It must be so hard to figure out the age gap when you're reliant on NHS waiting times! Then again, I guess you couldn't predict the gap exactly if you were trying naturally either. It's that feeling of it not being in your control that I find difficult to handle. Even though we were told 8-9 months from referral I've read so many different things and I expect there's always the possibility of hold ups. I'm only 30 so not really at a risky age yet, but I just worry about leaving it too long! Plus all my friends are having babies and I'm getting impatient!!

[ElphiasDoge]

@Tmr1989 I know, it’s really difficult when everyone around you seems to be falling pregnant at the drop of a hat and it’s more complicated for you. You’re right though, 30 is young and 3 cycles should give you good odds.

Obviously you’re at the mercy of the external when trying naturally too, all you can really control is the minimum gap! But if you decide you’re trying this month then you accept the possibility that it might happen this month, whereas deciding to have the referral means maybe 9-12 months and then if you’re not ready trying to work out if you will be by that time!

They said to me that the funding is allocated for a year so if you don’t proceed within that time you need to reapply, although for us CF is automatic approval anyway.

I feel more settled knowing we’re putting it off a little and just trying to focus on enjoying DSs 1st Christmas. I’m 31 so still young but then we did struggle before. I do get little pangs though when I see other pregnant women. A couple of close friends have just had newborns and I’ve been feeling sort of jealous but I think that’s more about everything that we’ve been through with DS than actually wanting another right this minute!

[Tmr1989]

@ElphiasDoge I think my condition is automatically approved as well thankfully, so hopefully that makes things a little bit more straightforward.

Wishing you a lovely first Christmas with your little boy! ❤ let's catch up next year when perhaps one or both of us will be a little bit further down that decision-making process!

[rm092]

Hi, I found out last year that I have a genetic condition (fragile x) which has 50% chance of being passed to a child. We saw the genetics team at Guys at the beginning of the year but by the time we decided to pursue PGD, covid had started and the clinic stopped operating.
We're now in a position to be referred and they've said the covid delay will add on around 6 months, so now we're looking at 18 months in total from now until pregnancy. Just wondering how accurate this sounds for people that have already been through PGD?

[Ginandtonic31]

Hi @rm092 it would be hard to say with Covid changing everything. I was at Guys but via Sheffield. We were a year from referral to starting treatment so it does seem about accurate. But sometimes I think they can be faster. I would say expect the 18 months then it will be a nice surprise if sooner.

[Mimi2022]

Did you start the process already? I’d like to hear more about it, timelines etc.