Late term abortion - 31 weeks

[Hellokitty1986]

Trigger warning....(abortion)

Termination at 31 weeks due to extenuating circumstances (uk)?

I will start by saying my son has a genetic disorder which is spontaneous (it was not passed on through me or dad) just one of those unfortunate things. He is 8 years old and In turn, this genetic disorder has caused a cancer that has lost him the use of his legs the past few months. Previous to this he was on a drug trial which was going well and all this decline in his health has happened during the pregnancy which has been hard in itself. Regardless, he is excited to meet his brother as he has been very isolated especially recently.

I had an amnio to rule out my sons condition in this new baby (that would be unlikely considering both me and my partner) and the other few they test for in the UK (downs, trisomy, edwards and pataus). All came back negative.

Everything looked great until 28 week scan. Prominent fetal gall bladder. Asked for a termination. Said no come back in 2 weeks as may resolve. Came back for 30 week scan and it's worse...Prominent gall bladder, dilated bowel and ascites around abdomen (fluid). I am going to speak to a consultant on Tuesday but regardless of what they say this sounds awful. I am also stunned that the only test for 3 genetic disorders with the NHS amnio. I was absolutely sure that they said they test for more. I remember I did ask could I get more extensive testing privately and the dr at Manchester said no, he's never heard of that. I've since realised that's not true. I feel like such an idiot. I am seeing a consultant at another hospital next week but this screams chromosomal disorder already.

Would I be able to make a case for a termination at 31 weeks (UK) due to my sons declining condition and the fact that I cannot look after 2 sick children? I cannot cope watching another child have a bad and painful life brought into the world by me.

Will he be in pain in my stomach if he dues have these anomalies? I can't eat or sleep. I feel sick as a dog.

No judgement, you need to do what you feel is right for you, your child and family, and the unborn baby. I hope the doctors can run more tests for you to get a clear answer. But most of all I hope any issues can be treated - it sounds like you have, and are still, going though so much as a family, you deserve some good news. Best wishes

I couldn't read and run. I hope and pray that your outcome will be the best possible and I'm so sorry you're having to face this appalling decision. No judgement here, only hugs xxx

I am so sorry that you are going through this OP. No judgement here. I know it feels like forever to meet the specialist but hopefully when you do the prognosis will be positive and you won't have to make such a hard decision.

Possibly not much help but I found my sin had a genetic condition and I was offered a amnio at 35 weeks. I'm not sure I would have the results before birth but there was strong unsaid hint they would abort right up birth.

Personally for me I thought "what the F use is that is use to me now?" So I didn't have the amino and they would screen the baby until they was six months old which again was excruciating.

I kind of understand as I went from the genetics appointment straight to maternity and was admitted with stress. They allocated me a MH midwife who didn't do anything and I never saw after birth either. All so inconsistent and your alone in a situation no one can ever really fathom but you.

Didn’t you have the Harmony test? I was given this via the NHS (London-based).

Really, really sorry you are going through this. My family lost a baby due to a rare condition a few years ago and it was so tough 💔

I got the needle through my stomach. The one that tests for downs and pataus and Edwards. Pretty useless when there's like thousands of genetic diseases imo. But they keep mentioning this test being negative like I'm in the clear or something.

@BunnyEaster would you mind me asking what genetic disorder it was x thankyou for sharing your story with me x

I am prochoice, only you can answer the question you're asking. If you dont feel you can cope and you want a termination then this is your choice to make, no one else will be there to care for your two sick children but you and your husband, between you both you'll come to a decision to suit your family

@Hellokitty1986 Im so sorry you are going through this. I had a CVS which is the same as an amino but they take cells from the placenta rather than the fluid. We received the 3 main condition results first, then the full microarray of all genetic conditions a week or so later. I wonder whether you too had the full array and the negative statement was in relation to all testable genetic conditions?
sending you so so much love in such a difficult situation. I can hear you are trying to do the very best for both of your children ❤️

@Tiddlersfish was this with NHS in the UK? X

Yes it was, last year, so recently.

Hi OP, it might be worth asking if they will do another amnio or if they still have your first sample. They definitely can do the full micro array. However, I believe they only do it under certain circumstances ie if there are visible abnormalities on the scan. If your earlier scan was normal then they would just test for the main three, plus the one your son has. However, now that you do have something showing on the scan then I think they should offer you more testing. Hopefully the consultant will be able to clear it up, but also hopefully it is something easily resolvable.

I do not have experience of an ill child, but I did have a tfmr in pregnancy (and had full micro array on nhs). I would also recommend speaking to Arc, as some others have suggested.

There will always be people listening and caring here.

Hi OP I don’t have any words of wisdom but sincerely hope that you will have a clearer understanding on Tuesday when you are seen by foetal medicine consultant.
Hopefully it is a bowel issue that can be fixed after birth . 🙏🙏

Hi OP, does your son have Li Fraumeni? I ask as I used to be an oncology nurse for a long time and I just wanted to say how sorry I am. The post saying to ‘just have your next baby adopted’ and ‘maybe he’ll have lots of friends one day’ made me feel sick with fury. I see what parents go through and I’m just so sorry for you all. I would say to see a consultant asap. You need to understand the seriousness (or hopefully not) of your baby’s condition to make a really informed choice. And no judgment - I’d do whatever is best for you after the shit you’ve been through. Sending love x

Ffs. Leave the OP alone.

thinking of you at this very difficult time i have been in a similar situation to a much lesser extent and the sress and worry of it was immense it is an awful situation to be in look after yourself and do whatever is best for you and your familyxxx

Honestly op no judgment here. Keep posting for support, ignore those suggesting adoption or that you shouldn't go for medical termination. Your doing great 💐

I did, like, 4 hours ago.
?

So sorry to hear about your situation OP. It's just so stressful. I would absolutely feel the same as you and consider the worst case scenario. I would still wait for the expert opinion so you can make an informed decision. I am sure whatever you decide will be the right decision for your family and your circumstances.

I had a late TFMR years ago and like some others in this thread, I did CVS and amnio and at first they just tested for the main 3 abnormalities and they were all clear, but they were able to do the full micro array that looked at all of the chromosomes. I hope this is an option for you because it might be able to shed light on what you are dealing with. But definitely speak to someone (consultant, dr., ARC etc) and get all the info. Sometimes these things resolve on their own or can be managed with medical intervention, so getting all the information before making that decision would be beneficial.

I'm not a doctor but when I was still pregnant with the sick baby, I went to my GP for diazepam as I was struggling with everything, and I asked if the baby could feel pain or whether the meds would be harmful, and the GP explained that they wouldn't feel much at that stage as they're still developing. I've read a lot about these things back in the day and I don't recall anyone suggesting they feel pain so I would try not to worry about this particular thing.

My heart goes out to you OP. You're an absolute warrior going through all this. Ignore everyone else and their opinions because this is entirely your decision. Apologies I'm not articulating my thoughts very well, but you will be in m thoughts and I wish you all the best. I would be happy to talk if you ever needed a stranger to chat to.

I’m so sorry that you’re going through all of this, it’s just so incredibly unfair. I ‘chose’ to have a TFMR after confirmation of a medical condition, as we felt it would be the better of two horrendous options - the word ‘choice’ feels so inadequate when it feels like no choice at all. I’m sorry, too, about the appalling comments from a certain poster who, as you so rightly said, can and (hopefully) will never understand. I have everything crossed for the best possible outcome and second phoning ARC if you haven’t already - they were a godsend in helping me to understand medical jargon and being an incredibly supportive and unbiased ear.

Your language in this is deliberately emotionally blackmailing and completely unhelpful. You should reflect.