Spiralling about something being wrong with the baby after IVF/abnormalities in previous PGTA

[SarahAndQuack]

I'm 39 weeks pregnant. I'm 41, single, this is an IVF baby with donor sperm. As the title says - I'm just spiralling a bit, and I wanted to write it down so hopefully someone can tell me 1) if it sounds stupid and 2) maybe help me stop getting so stressed.

Basically, I keep worrying about this baby. I know why. Immediately before I did this IVF cycle on my own, I did a cycle with a gay friend of mine and his partner. The clinic we went to told us to do PGT-A testing, which, if you're not familiar (I wasn't!), is when they freeze any embryos you get, test some of the cells, and tell you if the embryo might have a chromosomal problem that'd result in a miscarriage. It's controversial, which I didn't realise at the time; TBH I didn't really understand properly what it was even trying to do, because they pretty much said 'here's the test, you should definitely do it, it's all good' and then rushed us on to starting the cycle.

The one thing they did say - and I know now this is basically right - is that lots of embryos have chromosome problems. Even if you're really young and healthy, it happens all the time and it's not a sign of any deeper issue. Usually you wouldn't even know about it (most embryos with these problems don't even get as far as a positive pregnancy test, so you'd just assume you hadn't fallen pregnant that month).

So we did the cycle and they did the test, and they told me none of the embryos had come through. I had to pass the news on to my friends; I assumed they'd be feeling sad (like me) and I asked if they thought we could try again. And one of them looked absolutely disgusted and said he didn't think so, 'not if they're going to be abnormal'. Later on he made it clear he considered any 'abnormality' to be nothing to do with them and entirely my issue. He was obviously thinking that we were talking about embryos that would result in babies with disabilities, and that this test had basically diagnosed a congenital problem with me.

It really floored me, and I would have dealt with it better, but I had been expecting the clinic to step in and explain the test results and talk us through it all (which is what they said they would do), and they didn't.

I found the whole thing really upsetting; it was horrible in lots of other ways I won't get into here. I felt I had to crack on with the second cycle given my age, and that feels like absolutely the right decision. I've been trying to be positive, and I've had tons of counselling. But I found it really hard to believe the baby is real, and is going to be ok. And now I'm very close, I am really frightened that there is something wrong. There's no logic to it. I keep beating myself up about stupid things, like not being able to feel much movement (anterior placenta; every scan shows him doing the macarena), or having too much coffee, or whatever. I'm just scared and sad. It'd be really helpful to know if I sound a bit crazy, or if you can understand why I feel like this?

The whole process of conceiving via ivf, the 'friends' turning their noses up at trying again... it all sounds incredibly stressful and lonely for you, but you probably just had to plough on and make the best of it. You've got through it by yourself, which is hard even in much simpler circumstances, and now at moments from the finish line you're having a wobble. Perfectly understandable to me!

It sounds like your baby is just fine tucked up and waiting to meet you. But look, even in the worst case scenario where there's something medical to deal with at the birth, then you cross that bridge at the time. At this point it's a baseless worry and not worthy of stealing the peace and enjoyment of your pregnancy. This will be your beautiful lovely boy, end of. All that said, you should mention to your midwife how you're feeling as it's more about your stress levels than the likelihood of any abnormalities, and they'd want to keep an eye on your mental health and support you.

Oh mate I want to give you a big hug, you don't sound stupid at all.

Your 'friends' sound absolutely awful, I'm no expert but I know it literally takes two and I doubt there would be any way to prove which side any chromosomal issues came from at that early stage?

As pp says you've gone through a huge life event on your own, off the back of an unpleasant experience, so please be kind to yourself. It won't be long until you meet your lovely boy and hopefully can put the worry behind you, definitely speak to your midwives about how you're feeling so they can help you through this last week or so waiting xx

PGTA will have tested for chromosomal abnormalities only, not genetic things related to you (like CF or something). These will have been identified at your 12/20 week scans if baby has them. PGTA is controversial because there are so many cases of women who have implanted PGTA abnormal/mosiac embryos and had chromosomally normal babies, due to embryo's self correcting, and yet clinics push it because they can charge for it.

Anxiety is totally normal, and your friends sound like complete arseholes, but the issues effecting the previous embryos shouldn't be affecting this pregnancy, or it would have been identified already.

I also worried myself sick about there being something wrong with the baby, and I didn’t go through IVF or anything like that.

Most of the SEN parents I know actually didn’t get a birth diagnosis and their babies don’t have chromosmal abnormalities, they just failed to develop as expected and didn’t reach milestones (apart from one friend whose baby had downs, that is obvious at birth).

I basically worried until my little ones were walking, talking and communicating and reaching those milestones.

My best advice looking back now they’re older would be there is ALWAYS something to worry about. When your baby is born healthy (as I’m sure he will be), you’ll be worried about his feeding, or sleeping, or a rash… then if he’s meeting milestones, then if he’s settling into school ok. Worry is just part of parenting but make sure to put it aside from time to time so it doesn’t ruin everything.

Thanks all, so much. Sorry, I went quiet today (I had a sweep and a scan and a lot of waiting around in hospital; you know how it is!). Now, obviously, can't sleep!

@trallers - Yes, thanks, that makes total sense that it's just stress coming out right at the end. I mean, I am so lucky and so excited about this baby - I do know. I haven't said a lot to my midwife (she's new anyway), but I do have people keeping an eye on my mental health with me as I know the risks of it getting out of hand postpartum. Thanks so much for reassuring me.

@ChasingRainbow5 thank you. With whether you can tell whose chromosomal issue it is ... basically I spent ages trying to understand. The clinic were totally unhelpful but lots of clinics say you can tell on balance of probabilities and it was probably mostly me and a little bit him. But I just feel shellshocked (still!) because I was really blindsided by them being so disgusted by it and the irrational bit of me just worries I am missing something with this baby.

@Howeverfar thank you, you are being the voice of reason and I appreciate it. It's absurd - I am reasonably rational and intelligent in my day-to-day life; I know enough to get my mind around this stuff and I do (now!) get how PGTA works; I just didn't then and naively assumed the clinic would sit us down and explain it all as they promised, so I didn't really try to understand the details in the short time-frame before we did the tests. I think it's made me feel really doubtful/inclined to second guess things. But you're right; rationally there isn't a reason to worry and everything looks ok.

@FernFaery Thank you. I'm so sorry you had those worries too. And YY, I know lots of parents with children born with disabilities, and often they didn't find out til later. And, I'd like to believe if this baby did have something, it wouldn't matter! I wouldn't patronise parents I know who have children with complex needs because I know it is normal to have extremely complicated reactions and just saying 'ooh I'd love my baby anyway' is dismissive of all the other things that are in the mix. But I would hope I would be ok.

I take your point about worry being constant! I expect that's what this is, just me gearing up to be protective of a tiny thing that's going to be very needy.

So grateful to everyone for taking a moment to make me feel better. It was really helpful!

Ah, the pre-birth insomnia, right when you're needing to rest more! Keep posting if it's helpful - even if the situations aren't identical, worrying is such a hallmark of motherhood and there's always someone around who can offer a hand squeeze and some reassurance.

Coming back on your thread I'm feeling cross on your behalf about those friends all over again - such an unnecessary attitude that then got under your skin at a vulnerable time. Hopefully you feel it's for the best that IVf that didn't involve them was the one that worked - at least you don't have to factor them in in any way and you won't have any surprise upsetting comments down the line.

All the best for the birth, it's going to be such a wonderful journey.

I’m so excited for you. I’m sure everything will be fine. Pre birth insomnia is a mixed blessing - you kind of get used to being awake at night which is useful for when you’re up with the baby. I hope you’re resting during the day.
Good luck with everything. It’s so exciting. X

Oh bless you OP. I think you commented on a lighthearted post of mine on another thread recently about potatoes or something!

I don’t know anything about those tests but agree your friends don’t sound nice and you’ve been through a lot. I had IVF as well many years ago and it is no joke; I was very anxious throughout my pregnancy as well (twins).

I hope you have some support around you and will be thinking of you as you prepare to meet your baby. Good luck and update here if you have a chance.

Oh, thank you so much! You are so kind.

YY, it's ridiculous how you can't sleep just when you need it!

I absolutely do feel that I dodged a bullet - I just wish I'd had more time to process it, because although rationally I can see it is much better doing this on my own, there's still a huge bit of me that feels as if I have whiplash and I'm waiting for someone to say 'hey, don't worry, it was all a mistake about them thinking another baby would be abnormal'. Which I suppose is what very kind people on this thread are doing!

I so much appreciate you cheering me up and making me feel more positive!

Ha! Yep, I am anticipating a lot more middle-of-the-night wakefulness.

Thank you so much for those kind words.

Ooh, I might have done! Rice and pasta and potatoes.

Thanks very much for sharing your experience of IVF (and, gosh, twins, that is wonderful but full on!).

And YY, will update. I appreciate this so much.

Perhaps the universe thought they were morons and decided to avoid...

Only joking obviously (if only that was how the world works...).

Done a lot of IVF here. Here's my understanding of PGTa, which we did (a lot 🙄). PGTa testing tests for the right number of chromosomes. When an embryo has the right number they're called euploid, when they dont theyre called aneuploid. The VAST majority of aneuploid embryos are 'de novo' - as in, created when the embryo was created, random, new. Not inherited from either parent, just a brand mess up in the genetic building blocks of the embryo.

So it WOULD catch a random extra chromosome (like in Down's Syndrome), or a missing one. You would also have become aware of these in your 12 and/or 20 week scans.

PGTa testing is great because a lot of those aneuploid embryos would never get anywhere with growing once implanted, so they'd either not implant, or implant but then fail early, or fail later on and poor parents are then distressed by a miscarriage. It would identify Trisomy 16 and 22, both of which are almost always fatal to the embryo and considered a huge cause of miscarriage. In the IVF world, this is also a very expensive waste of time as you're paying to transfer embryos that may not/are likely not to be genetically viable and aside from the emotion, your cost and time to successful pregnancy is then longer.

My clinic recommend PGTa testing if you have loads of embryos because it cuts down your time and cost in 'sifting through' naturally by transferring them and seeing what happens. If you only make one or two they deem it not worthwhile as the cost of the testing vs just transferring and seeing is negligible (ignoring the emotions for parents obv).

PGTa would flag inherited conditions, but ONLY if it meant that the number of chromosomes was abnormal - it is essentially just a counting tool. So lots and lots of conditions e.g. cystic fibrosis will look normal to PGTa because they're still the correct number of chromosomes. If you or the genetic father had (even without knowing it) Klinefelter Syndrome, Turner Syndrome or Jacobs Syndrome (all caused by either missing or extra sex chromosomes inherited from parents) then this would have been screened out.

As you have gone on to have successful euploid embryos, you can rest easy that your baby does not have any of the aneuploid conditions.

There is, of course as there is for any of us, a chance that your baby could have another condition. However, by far the most common of these are structural (heart defects, spina bifida, cleft palate) or achondroplasia which is a frequent cause of dwarfism, and you would know about these by now as you've got all the way to the end after scans where these things are specifically checked for!

When baby is then here, they'll offer to test them for a raft of conditions (cystic fibrosis, sickle cell and so on), some of which are inherited, but PGTa would have missed. The great thing about the heel prick test is that they are all conditions where early diagnosis leads to targeted treatment so they can be managed beautifully and often have only a very small impact on their lives going forward with the correct treatment.

If you've got a pgta tested embryo that becomes a baby with a clear heel prick test, your risk of anything genetic is then around 0.5%.

Now - importantly!!! Your 'friends' are c...ts and also just a bit thick. BUT - ivf is a uniquely horrific process that fucks with your brain (ask me how I know....!). IF this is just late pregnancy worry that has been reassured by this thread and goes away when baby is here then brilliant. But IF baby is here and you still find yourself thinking, but what if this, what if that, and the thoughts don't stop and you are plagued by them, please please please seek support from your GP and perinatal team that they can refer you to. OCD and other anxiety disorders, often characterised by an inability to stop worrying about baby no matter how much rationality youve tried or research youve done is VERY COMMON for anyone postnatally but especially women who have been through the absolute head fuck that is IVF. So if your brain still holds on to this stuff when your baby is in your arms, people will help xxx

Best of luck. My IVF babies are the best thing that ever happened to me. You're in for the greatest adventure ever ❤️❤️❤️