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.

Wishing you all the very best for your appointment on Tues. Hopefully the appointment will help you make a decision, I am sure you will make the right one for you and your family. So sorry you are in this situation, life is very unfair

My son is very much not pain free and a complete invalid even though his mind is sharp. He is locked in abody that doesn't work and is in consistent pain. So it is a completely different situation I guess.

Maybe those whose ill-informed and unasked-for "opinions" amount to unkindness to OP could think twice before posting? Would that be a thing?

I can't help but think you're getting ahead of yourself. Understandable perhaps, but just try and take a step back and await further information.

Really feel for you OP, and faced with raising a second severely disabled child I think most of us would consider a LTMR.
I know it's not a given that anyone on here is who they say they are, but the few posters who say the have qualifications in this field have been quite reassuring in their replies.
I am horrified (but not surprised) at that lack of support the NHS has given you so far. I would definitely write a list of questions to take to your next appointment. Take someone with you as well, someone who is assertive and will properly advocate for you.
The problem with these tests is that sometimes they can throw up all manner of concerns that worry the hell out of women and sometimes turn out to be nothing. Causes distress and anxiety at a time when you need peace.

I hope Tuesday comes quickly and you get the information you need to make a properly informed choice, and remember it is your choice. You have to do what is right for your family.

There is no "perhaps" about it.
OPs reaction, given her family history, is 100% understandable.

Sorry but you are being utterly ridiculous and making sweeping statements and judgements about people you know little or nothing about. This is a public forum where an OP has asked for support and advice. Your agenda is just as bad as those who you feel are upsetting others.
That said, all the very best to the OP, who is clearly having a very difficult time.

I know...I'm interested to know how many disabled children she's adopted so far. Lol.

When lightning has struck once, it’s very difficult to rationalise your brain out of thinking that it will strike again. In my second pregnancy, I was very prone to catastrophising. Even when I was admitted to hospital, I expected a still birth. I had a scan at 30 weeks and was convinced that all the little wavy things I could see around his head were evidence of a brain abnormality. Turned it out it was his hair. Someone with a normal history might have laughed at that point and relaxed but I just moved on to the next worry.

I’ll be thinking of you on Tuesday @Hellokitty1986 .

I’m glad to have helped even a tiny bit. It was one of the most difficult times in my life. We found out at the 20 week scan (which happened at 21 weeks). It was his heart that was most obvious as there were almost no boundaries between each one of the chambers. DS had short limbs, no nasal bone and various other obvious physical markers. We were sent to Great Ormond Street for some follow up tests and I had an amniocentesis the day after the scan. It took 5 days to come back with the results and we choose a TFMR immediately.

Bizarrely it was the easiest choice I’ve ever made but the one that has left me with a stain of guilt I will never be able to shrug off despite years of therapy. We then had genetic testing to find out of either me or DH were carriers and 3 months later discovered we weren’t- it had occurred de novo in DS. Which was a huge relief as the prospect of having to get our DD tested and the rest of my family (95% chance I was the carrier) was terrifying.

DS had an unbalanced Robertsonian translocation. About 5% of children with Downs have this and the genetist told us that it was associated with more severe comorbidities. We were told it was around a 1:14 million chance although I’m not sure that’s correct - I was in a very bad state and for some reason I can’t remember who told me that or if’s a false memory. I do remember thinking it was the same odds as winning the lottery and I’d far rather have bad that sort of luck.

I’ll be thinking of you on Tuesday. If there’s anything else you want to know just shout.

Our 29 weeker had a lot of pain at first, he was extremely unwell for 6 months, and then had another operation at 14 months. However he is now an active, healthy and very happy 9 year old. He sees a consultant twice a year and has some developmental delays and autism but you wouldn't be able to tell the start he had and he doesn't remember any of that pain.
Like you've unfortunately seen its not always the case, but it equally can be the case, and thankfully is more often than not. I'd try to focus on that, it's understandable that you're going to worst case scenario, but try to think back to how you would look at the situation if you hadn't been through the trauma you've had already.

Oh op. I cannot even imagine how worried and upset you are. Look after yourself and your family. Find out more and make the best informed decision for your family.

Just quoting so I can reassure OP and second your experience.
This is exactly what my Friends DS was born with.
2 corrective operations and now he's a bright and funny 3 year old.

who has been unkind? I think you need to give your head a wobble

I never said anyone was lol. I'm desperately seeking advice from people who have been through similar so I can try and get more info before my appointment. A couple of professionals have even commented which has helped. Useless comments like this are setting off the notifications though.

Drop the bone.

The OP has replied to you, she is right. You could never understand.

find another thread

Oh bloody hell. I do hope you get some positive reassurance on Tuesday

I wasn't addressing it to you it was to someone who was being rather sanctimonious about different views.

I have a health background and amongst other things I was a midwife although some time ago.I have said elsewhere on this line that having seen the printout you posted that I am not sure that this is an unresolvable disability. You need so much more information before you make a decision.

The thing that I believe that you really must consider is that if you deliver a baby at 30 plus weeks then it is likely to be viable. It might not survive long if delivered early but it could, what would you do/feel then? if the baby has a certain condition not compatible with life the drs may decide to do something before delivery to end the life (I don't know the procedures now) but from what you say that is not the situation.

this is horrible for you, I completely understand and you have my heart felt sympathy but I am trying to offer some realities. You have had a lot of understandable sympathy from people posting here but more than that you need help in thinking around the issue.

lastly an acquaintance was told from several scans that they believed her baby to have a very small brain. She struggled with the decision but did not terminate the pregnancy and the baby was normal when it was born. Small but completely normal.

OP will not give birth to a live baby in a post-viability TFMR. The baby will receive an injection into the heart to stop it.

I had low papp-a and was sent to fetal medicine with my son due to dilated bowel.

Exact same set of circumstances this time...low papp a and distended bowel plus more. I have asked for a termination 3 times and was told it wasn't good enough a reason and now I feel backed into a corner.

This is history repeating itself, I did not save my son but I can save another human from living this existence hopefully. You would understand if you've seen what I've seen.

I actually felt a bit more relaxed when I read about this. I was putting off reading about the procedure. X

There is an Antenatal testing board on MN too which might offer some advice from people that have been in a similar situation. Not sure if anyone's mentioned this before. I found the board (and another similar board) very helpful in the past. There are lots of people there who have plenty of experience of antenatal testing, TFMR and other pregnancy choices. In case you weren't aware. 💐

That's amazing I'm going to go post there! Its great that this is UK based too as when I posted on reddit I got alot of American replies. Good info but often have better testing available that I was unaware of.

I agree OP.

@Sodthesystemit wasn’t your place to suggest that, and even going so far as to outright ask it as a question.

Love to you all xx

I'm sorry for what you're going through. I had a TMFR at 32 weeks due to my baby having significant brain abnormalities that likely meant that he wouldn't have had much of a life. There was no specific diagnosis and it took a good 4 weeks and more tests (amnio, MRI) before we had any kind of clarity, and even then I think it was based on the 'best estimate' of the consultants. They made it clear that the choice was entirely ours and one doctor said afterwards that we'd done the right thing, but I don't know how clear cut the test results need to be in order for this to be the case. I agree with a previous poster that ARC is really helpful.
Good luck for your next appointment, hopefully all will be well x