IVF or risk termination for medical reasons?

[PeachPearPlum7]

I have a six month old with a rare and serious genetic metabolic condition (don't want to specify because so it's rare it could identify her). We don't yet know what her future will be like but the condition has already given her brain damage affecting her movement and its possible she may not walk and may have painful muscle spasms and fits as she gets older.

She is on a feeding tube and has to take a huge amount of medication every day. I love her intensely but it is so difficult looking after her. I'm desperate for more children but really don't want to risk them having the same condition. It's genetic and there's a 1 in 4 chance my future children will have it.

Our geneticist has said the NHS would fund one round of pre implantation genetic testing, which is essentially IVF and then only selecting the embryos without with condition. Or I can get pregnant naturally (I conceived dd easily so hopefully would get pregnant quickly again) and then have a CVS at 11 weeks (where they test a small sample of placenta), with results after 5 days, and if the baby has the same condition I would be offered termination.

I don't know which to pursue. I have lost a pregnancy at 13 weeks before and gave birth to the very very tiny baby. But she did look like a baby and I don't know how I could willingly do a termination so close to that point knowing how they look at the stage. I am very firmly pro choice, but for me personally that loss has made thinking about terminations for myself much harder. And if it came to it I also don't know how I could explain the decision to terminate a pregnancy to dd1 when she's older, because I never want her to feel like we wouldn't have chosen her had we known/had a choice.

But on the other hand IVF is such a long and difficult process. And getting pregnant naturally gives me a 75% chance of having a baby without this disease.

Really just looking for thoughts and opinions. What would you do? How would you decide? Does anyone have experience of making this choice?

Bump?

I think you would need to be honest with yourself if you could terminate or not, and what effect it would have on you.

If you don't think you could go through with a termination or it would leave you traumatised then IVF is really your only option.

I would do the ivf. How old are you? Could you perhaps wait a year or two though? 6 months is early post partum to be thinking of another baby

Thanks @MadeForThis . I think you're right. My partner is saying that he would much prefer the IVF route because he doesn't trust that I would actually go through with a termination if the condition was diagnosed at 11 weeks.

I can't work out if we're just making life really unnecessarily hard for ourselves by pursuing IVF or if it's the sensible choice.

I’d do the IVF too.

To go through getting pregnant and then finding out I’d have to abort would feel soul destroying and what then ? Do IVF? Or try again? possibly abort again?

Its a very personal choice, this is just my opinion.

It's such a personal choice. I have done IVF and didn't find it tough at all. After infertility is was a little mentally draining as the stakes are so high, but if I was you I would do it as you always have the other option to consider after if you wanted to. Physically I found it fine.

The only thing to consider, and I can't remember exact details as it was a while ago, but our consultant explained that with PGS they sometimes find abnormalities in the embryos which may not cause any problems at all, but as they have been tested they are not allowed to use them, so you can end up throwing potentially fine ones away. But again I feel that's more of an issue if you are debating between PGS or not.

If it's free I think I would do it. You have very little to lose by doing the IVF and if you get a good number of eggs will probably give you better odds of not having the genetic issue. But nothing is guaranteed and that's where it can be mentally tough. You may get very few eggs, or have a high drop off rate after fertilisation. So it's not a perfect option but I would do it myself.

Sorry I feel I waffled there but hopefully you get the jist.

Thanks @Whoatealltheminieggs . I'm 31 and not planning to get pregnant until summer next year. Hopefully by then dd1 will be either off the feeding tube or at least only using it once or twice a day, and we'll have a better idea of her needs and whether we actually can look after a baby and her. (Her feeding tube is needed because the brain damage disrupted her ability to suck but her doctors are hopeful she will be able to learn how to swallow and eat when she's a bit older).

I'm only thinking about it now because I've been warned the road to getting IVF via the NHS can be really long. So if we do go down that route I think I need to start asking for referrals etc in the next couple of months if I want to be pregnant mid next year. (Please say if you think this sounds wrong and the IVF route can be quick?)

I’ve had two TMFRs and it’s a real mind and body trauma. You don’t just snap back and try getting pregnant again (not that you or anyone on this thread has remotely implied this). But there’s a real recovery process after a TFMR and I personally began to feel like a vessel of death after 2 TFMRs and a miscarriage. In your case, I’d go for IVF, which also comes with its own ‘I’m not so straightforward’ badge. But I do think you’d bypass a lot of trauma going down the IVF route. And that’s really important. 💐

@Brunilde thank you! This has made me feel more hopeful about IVF. I've had friends do it who found the hormones really hard to manage and felt awful and crazy through the process. But it's good to hear stories from people that didn't find it too bad. Maybe I've built it up too much in my mind

I'd say do the IVF. It is not necessarily long and gruelling. It is not easy, but if you get pregnant quickly you probably won't need multiple rounds so just go for it.

Sorry, my grammar’s a bit shit in my post, but you know what I’m trying to say.

If the NHS are willing to fund the IVF and testing I would go for that. It can be difficult to go through, but for most women the worst part of it is the emotional, rather than physical, aspects of it - not knowing if it will work and you will ever be a mum. Following a battle with infertility this is really hard. The physical side of it can involve some discomfort, but it’s generally not too terrible.

For you, knowing you can conceive easily, it sounds like having to terminate would be far worse.

Unless you’re really on the clock in terms of age, can you give yourself a few months so think about it?

@TheVanguardSix really sorry you've had such a difficult journey 💐. Thank you for your advice.

Ivf is very hard if you are infertile. You are not. Ivf will save you tremendous heartache and moral turmoil. I did IVF (I was your age and have endometriosis) and thought it is not fun, the anxiety of not knowing whether or not I could ever have a child was the challenge, not so much the physicality of it.

Hi @PeachPearPlum7 I did IVF PGT-M (formerly known as PGD) due to a genetic condition and a TFMR at 13 weeks following a cvs (it took me a long time to get over that and then i proceeded to have miscarriages so turned to ivf). I am currently pregnant with my first transfer.
If you live in England (as i think Scotland is different) you get three rounds. You have to do each round fully before moving onto next round….so you couldn’t do three egg retrievals before testing.
Your funding stops if it results in a healthy birth. A condition has to be approved by HFEA but if it isn’t then approval can be obtained but that may take a while.
I was referred in March last year and had my transfer in April this year (could have been sooner as i waited a while from results of testing to transfer).
There are only a few clinics that accept NHS patients. One is Guys in London and then there are private clinics at Care Notttingham, CRGH and i think Oxford fertility. After acceptance my workup (as they need to create a probe) took 7 weeks and then i started stims.
Also bear in mind that they ask you to stop trying naturally once funding has been accepted. In theory you could be asked to pay what you had used so far for PGT-M if you did become pregnant naturally and this can be expensive!!! Also if the first round doesn’t work you may have a bit of a wait until you can start the second round.
Good luck with whatever you choose

@Minnie82 congratulations on your pregnancy! And also I'm so sorry for what you've been through to get here.

Thank you so much for all that information, it is invaluable! I've had a look on the HFEA website and the condition is listed which is a positive first step. I think the next thing for me is to speak to my gp.

I really can't express how grateful I am for you explaining the whole process, I really wasn't sure about timescales and how to go about it and it's so helpful to hear your story. Thank you! And good luck for the rest of the pregnancy! X

For ivf you can have what is called a long or a short protocol. The side effects people talk of all relate to the long protocol and are similar to menopause.
You don't get these side effects on the short protocol because it works with you natural cycle.
If you aren't afraid of needles and can handle about ten days of injections I would go with the ivf.
Much less traumatic to rule out a genetic condition than to play roulette

We did IVF with PGD. I think we had the original referral from our genetics team to Guys in September 2020, a virtual appointment with the genetic counsellor from Guys in November 2020. They needed blood from us and DS and he was having surgery in December anyway so we got that taken at the same time. First appointment with the assisted conception unit April 2021, told about 6 month wait to start treatment. Started medication August 2021, egg collection September 2021, results from biopsy November 2021, started medication with next period and transferred December 2021, positive pregnancy test just in time for Christmas.

It was a bit faffy, particularly as we don’t live that nearby and a few bits were mildly uncomfortable but it wasn’t really awful. I think it was different for us as we do have a child already (although like you affected). We paid privately for some of the monitoring scans as this was actually cheaper than the train fare to London.

There is a national agreement on PGD though so you should get 3 cycles not 1 unless there’s another reason?

As PP says they prefer to do short protocol unless another reason not too so it wasn’t that much medication really. About 2 weeks of injections. For the transfer you take oestrogen tablets and then progesterone which can either be inserted vaginally or anally and if positive you carry that on for the first 12 weeks of pregnancy which is a bit faffy as well but also doable.