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.

Hi @Hellokitty1986
Firstly - I am sorry that you have such an incredible, life-changing decision ahead of you. Especially considering that there is such a small amount of time in which you have to make that decision.
Secondly - the poster pushing adoption is absolutely ridiculous. And downright offensive. Adoption is an enormous decision, and these days children up for adoption have usually been forcibly removed from their birth family, not just "put up for adoption".
Thirdly - My son is adopted and has a genetic condition that can have physical, cognitive and behavioural disabilities. He also has one older and one younger sibling. The physical disabilities can be, at the least, life-limiting, and at the most life-threatening. Our son's siblings both have extensive aspects of the physical disabilities, whereas our son (the middle child) has none.

I don't tell many people this, but literally weeks after our son came to his forever home we were asked if we would consider adopting his younger sibling who had just been born. Due to his physical disabilities we said no. It's the most difficult decision I have ever had to make, but my partner and I knew that we had to do everything possible for the son we already had, and adopting a physically disabled child meant we wouldn't have been able to continue giving our son the support he needed.

I just wanted to share this experience with you - not to sway you in any way at all.
I'm sending heartfelt well wishes your way. Ultimately you have to do what is best for you and your current child.

Also, @Sodthesystem - neither of my son's siblings have been adopted yet, and it's likely that neither will. They will be "in care" for the rest of their childhood/adolescence. Why? Because they are disabled.

When I was pregnant with my DD I was told at my 20 week scan that she likely had spina bifida and a hole in her spine. We ended up going through at least 15 more scans, visited a geneticist and three specialists. My good friend is a fetal medicine specialist and also.did an after hours 3D scan for me as well. No one knew for sure what the outcome would be and most were positive she had it. I was not able to have an amino as I am high risk so we could not know for sure. It was torture but ultimately we decided to just risk the unknown. At the time they thought she would never be able to walk and possibly not make it past age 7.

She was born 8 weeks early and besides being premature she was perfect and is 19.now. It ended up that my scar tissue from my previous C-section showed up in the scans and distorted it so it looked like she had a lemon shaped head which is a sign of spina bifida. Your little one could have something similar going on as the scans aren't perfect. It is scary, but hopefully this week they can tell you more. ❤️

@Hellokitty1986 I just want you to know that you are being thought of and are getting many {{HUGS}} sent your way.
I hope Tuesday brings some clarity to your situation and good news. 💖

Sorry you are going through this OP and that the doctors are not being more supportive of your potential need for a late abortion.

So Ive been advised that I will have a very hard time finding a doctors that will sign this termination off. They will only do if mother is suicidal. The problem I have there, is thar my sick child might go into care then. I'm completely backed into a corner x

I’m sorry you are feeling this way - do you come within ground E and they are still refusing? Or are they saying it’s not clear yet if you come within ground E? Are you in the UK? Please contact ARC, I’d hope they would be able to help.

Sorry to hear that you are feeling this way. Is it because they don’t think there is a serious feral abnormality? If so I would really try to see that as a positive for now, until you get further information and reassurances. Hopefully you will have a lot more info after your appointment tomorrow, whether that is to put your mind at rest or to push doctors for the termination, whichever you feel is the best decision when more is known.

So sorry to hear your latest update OP. Wishing you all the best for your appointment tomorrow, I hope you are able to reach the outcome you want.

This is awful @Hellokitty1986 If that’s what it takes, to tell them you are, then that is what it takes. I am so sorry that your right to choose is being invalidated. The whole situation is obscenely upsetting for you. How can they expect you just accept this.

Did they give you any further insight into what might be going on with the baby? If not is there a path to trying to find that out quickly?

I know that you've jumped straight to baby has an awful genetic condition and will be in chronic pain, and there are very clear reasons for that given your history with your son. However they see these every day and are possibly thinking more along the lines of we see this every day, most of the time it's nothing or can be fixed with a minor surgery etc so on balance we can't justify it fitting the criteria for TFMR. They're also possibly concerned if they agree to it and it turns out afterwards there was nothing wrong that they'll get sued.

I really hope the outcome here is that baby does not have a life changing genetic condition and can have successful surgery and be pain free and live a normal life 😓

If not then I hope you get the outcome and support that you are hoping for

OP it’s so heartbreaking, I’m so sorry you’re in this impossible situation. It’s a living nightmare.
I went through this (though earlier) 5 years ago. It was in lockdown and I think I was ‘lucky” to find a practitioner willing to do the TFMR. My recollection may be hazy but I think for a late term TFmR you need a definitive diagnosis. You definitely need a microarray. Could you seek one privately if they won’t do one? The fetal medicine centre are amazing, as are ARC. They will have the most up to date information.
I had a CVS which they said would come back normal. The first results were but the second showed an extremely rare abnormality. The doctors were really shocked. The scan had showed a raised NT but that was it. I knew in my bones something wasn’t right and it was almost a huge relief to get the result because I knew exactly what I would do. The grey territory in between is absolute torture. I really hope you get some clarity. Please push for a microarray if you haven’t had one. I don’t think you can have peace of mind without it and if it did show something it would be much harder for the medics to push back.

I'm sorry there are so many ‘blissfully ignorant’ cunts on this thread. May they never know what it is to be in this position.

To suggest you might abandon your child to adoption reveals an absolute blindness to the fact that a TFMR is chosen with the most profound maternal love. Such a cruel suggestion and definitely one coming from ignorance and not experience.

sending much love xxx

OP, I’m sorry you are going through this. Who has told you you won’t be able to access termination without being suicidal? Are you seeing a Fetal Medicine specialist today? They should be able to go through in much more detail what they can see on the scan, what they think the diagnosis might be, and what uncertainties there are. I’m not in the UK but where I am it would be usual to at least offer a microarray as part of your earlier amniocentesis, if that hasn’t been done yet I expect they’ll offer it now and hopefully there should be DNA stored and available. Another thing to ask about in your circumstance is whether a whole exome sequence (WES) is available to you. That’s a much much more extensive check for as many single gene disorders as possible. That depends on overall findings and how you’re feeling though (and I’m not sure if it would be available in your area, worth asking). Agree with previous posters, findings could fit with something that “just” needs a surgery and then has a normal outcome, but could also reflect something more significant. I think it’s totally understandable that you are feeling how you are feeling just now and I hope you find support in choosing termination if that still feels like the right thing to you after hearing more detailed information.

Thinking of you today op 💐

Hope the appointment brings some good news for you.

I hoped for the best news for you today x

I’ve been thinking of you all day today. Sending love

Hoping things are ok.

So I thought I would update..although I don't really understand how this has happened. And I feel pretty nuts now.

But the in depth scan showed everything looking within normal parameters? And no fluid around stomach. I did ask for more in depth genetic testing of my amnio sample but I don't think they will agree to this (on account of nothing weird)

I am still stunned but at least I can relax for now?? I don't trust it 100% but..what can I do?

Thankyou so much for everyone that left kind messages and we're thinking of me yesterday. I don't have any family so that's kind to think of ppl caring about this outcome x

Thank you for the update OP. We've all been thinking of you and sending happy hugs now xxx

I just couldn't abort at that late stage of pregnancy. But it would be you having to do care so you have to decide if you'd prefer to do the care for DC or abort. Only you know if you could get over such a late abortion and how much support you have around you to help you cope with care. A dreadful choic to have to make.

Just spotted your update. Good luck OP.

What a good update. I have been wondering about how you were doing x

Wonderful news. I’m so pleased for you op.

Oh OP what a complete emotional mindfuck. So happy to read your update but completely understand that you're still worried. If it's an option, the fetal medicine center is absolutely excellent, the dr who set it up is a professor of fetal medicine at Kings, south London. If private isn't an option, it is at all possible that you try to get a consultation with him through the NHS?
www.kcl.ac.uk/people/kypros-nicolaides