Termination around 24 weeks

[CherryO88]

Firstly I cannot believe I am even having to contemplate. I am currently 21+3 pregnant with a very wanted and loved second pregnancy. All hell broke loose on Monday at my 20 week scan- baby has a major heart defect and she queried increased nuchal and slight rotation of the ankles. I have since seen a fetal cardiologist who diagnosed a complete AVSD probably with tetralogy of fallot. We have a 80% chance of this being due to Downs, although in my heart I know it is.
I am awaiting the harmony test and will have an amnio done with the fetal medical team on Thursday.
Once chromosomal syndrome is confirmed we are 90% we are not going to proceed with the pregnancy. This is due to our belief that the baby will not have a good quality of life and the road ahead is too uncertain and full of pain and suffering.
Has anyone any experience of a late term abortion? I live in NI so will have to travel and die to the laws here no medical professional has discussed this with me so far.
Thanks

Same. Really didn’t mean to offend or cause further upset.

It was just a natural response to reading something so upsetting.

I'm so sorry this is happening to you. The standard NHS procedure would be first to perform a fetocide - commonly an injection into the baby's heart to stop it beating. After that you would have labour induced, with several pain relief options depending on your choice. Once the baby's born we would do all the normal things with a newborn: weigh, measure, photos. Also hand and footprints. Even if you thought you didn't want these, they would be taken and filed with your notes as people often change their mind later. You would be able to spend as much time with your baby as you wanted. There should also be people on hand (bereavement midwife/chaplain etc) to discuss funeral arrangements etc. If the fetocide is performed before 24 weeks then there's no need to register the baby even if the birth is later. I hope you get some definite answers soon, thinking of you.

It was just a natural response to reading something so upsetting

No it was selfish, thoughtless and profoundly unfair to OP who is suffering enough already, without judging and flippant comments.

I’m so sorry you’re going through this and that if you do elect to terminate it’s so much more difficult for you. I’m guessing it’s even harder to get to the bottom of what’s involved and quality of life there too. Sending you strength to deal with what you are facing,

Don't be scared of the process OP. I was induced with a stillbirth at 26 weeks but had a very positive experience. The medical staff were amazing, and sadly it's something they are very used to dealing with. I was induced with pessaries, and it took around 24 hours as it was my 2nd baby. The birth was very quick when it happened as he was small. We had several hours with him until we were able to say goodbye, had some paperwork to sign regarding post mortem etc and were home around 8 hours after I'd delivered.

I'm so sorry you're having to go through this .

Thank you all so much for your thoughtful replies.
My DH is so supportive, the downs does not bother him but more the heart condition. We were given a very bleak picture by the cardiologist who also implied he expected further issues to arise as the weeks go by.
For me it is the combined chromosomal syndrome, of which we have no idea of how minor or severe the affects will be, with such a major heart defect. I am from a medical background and looking at the scan I couldn’t believe the heart was even able to beat.
Due to the environment we live in we have kept it this within a circle of close family and friends, all of whom have said they will stand by us whatever we decide.
I also have a 17 month old DD. Once the baby is born we will likely be transferred to a hospital in England (they don’t perform cardiac surgeries in NI anymore). The huge impact of her being separated from her parents for such a long period of time at such a young age is also weighing so heavily on me

No it was selfish, thoughtless and profoundly unfair to OP who is suffering enough already, without judging and flippant comments.

It wasn’t flippant or judging. Speaking as someone who lost a baby at 23 weeks and had to give birth, what I wrote was correct, if I was judging I would have said it’s a baby we are talking about ffs. I didn’t at the time but now I have.

You can’t come on a forum asking for advice and not expect people to share their views. Regardless of if you asked them or not.

She asked for experience of late term abortion, not what your personal opinion is of it.

Cantremember if you think I am unaware of the fact that this is my baby, my child, believe me when I say you couldn’t be more wrong. I am trying my best to be the best mother I can be to my child, if that means ending indeterminable pain and suffering while destroying my own heart then that is what I am going to try to do. I believe in quality of life, not quantity.
I am so sorry you lost your baby at 23 weeks, I really am.

Fallouts is treatable. It requires surgery but there are generally good outcomes - although an amount of stress whilst awaiting surgery. If you’re ambivalent I’d be tempted to speak to the British Heart Foundation advisors or call and ask to speak to a clinical nurse specialist from a paediatric cardiac surgery centre. Get facts rather than scare stories of google. Some aspects such as VSD and PDA are almost routine on paediatric cardiac units or even resolve spontaneously. The overriding aorta and stenosis need surgery in the longer term. It is a scary thought but don’t decide until you really understand the implications.

I wouldn’t assume the ToF is linked to Downs - it’s not as common in Downs as other cardiac anomoloies (4% or thereabouts).wait for test results. The most usual suggestion now is a termination - even for Downs alone- but that doesn’t mean it’s necessarily the right decision for your family. Speak to experts and really understand what the prognosis and potential difficulties will be.

It’s a horrible place to be. Termination in these circumstances is inevitably traumatic but only you and your husband can make that call. Whatever you do will be the right decision but that doesn’t make it easier.

OP, I don’t have a similar experience to share with you, but I just wanted to wish you and your family well. What a horrific experience for you.

(And I know you didn’t ask people what they’d do in your situation, but I just wanted to say that I’d also be leaning towards termination in your shoes. I’d also have to travel to the UK. It’s horrendous).

Hello OP I am so truly sorry for this. I have experienced similar - a 20 week scan that revealed a severe heart defect. We unfortunately went on to have a TFMR.
If you want to PM me to chat about anything please do. I don't know what your options will be - if anyone has spoken to you about them - but for me the only option I was given was to be induced at 21 weeks and essentially go through labour.
I won't go into detail here but I'm more than happy to talk to you about my experience/what to expect if you might be facing the same if it will help.
I'm so sorry you are going through this x

I know she did leftright, I did read the post, but people are bound to share their thoughts and advice, regardless of whether it was asked for. It’s a public forum.

Cherry, I genuinely didn’t meant to offend or cause further hurt. What you are going through and are about to go through, regardless of your decision, I really wish you strength and courage.

Like I said before I can’t begin to imagine the torment you must be feeling. My post wasn’t meant to cause offence. I know how utterly heartbreaking it is letting go when you don’t want to.

I don’t have anything else to say, our situations are different. I really didn’t mean to cause you any more suffering. I’m truly sorry if I did.

My heart goes out to you OP. I have had several friends who have chosen to terminate for medical reasons and it is never an eady option.
If you choose to terminate and will have difficulty paying for the flights and accomodation in England then the Abortion Support Network can help.
Sands (stillbirth and neonatal death society) can also provide emotional support. Sands support anyone who has experienced the death of a baby, tfmr included. It won't be an easy thing to do, this was your much wanted baby and you will grieve. Please ignore anyone who says you can't.
I was induced with my first son after he died and the hospital were so so kind to us.

Oh,OP. I am so truly very sorry. It's so unfair. I wish you all the very, very best.

My daughter has tetralogy of fallot, she had a repair at about 2 years and will need a valve replaced when she’s older. She doesn’t have downs.
I’m so sorry you’re going through this, I’m 18 weeks pregnant and due my anomaly scan in 10 days and I’m scared it’ll happen again.

Sending you love and strength OP.

One of my twins has had health issues from birth, some of which have been quite overwhelming and we are still in the process of getting to the bottom of everything. Even though he’s an extremely happy toddler and the difficulties he has are minor compared to many, it’s still extremely difficult to be the parent of a disabled child and the anxiety and worry that is constantly with me is so so hard. I wouldn’t change having him for the whole world, but we are very fortunate that it’s not more severe than it is.

I think it’s important that you do what is right for your family and I completely understand how painful it must be to have to contemplate this when they are so wanted and loved. I really hope you get the support you need through this process, whatever steps you take.

So sorry you and your oh have this decision to make. Nothing more to say, take care of yourselves.

No relevant experience Op.
Just wanted to let you know I'm thinking of you.

Thank you all so much, I am in tears reading your replies.
We will not make any firm decisions until we have the amnio results back and spoken to the medical teams further.

no experience but thinking of what you're going through

Cherry I'd be making the same decision as you.
To the posters who don't think before opening their mouths, shame on you.

@cherry088 Just want to echo a previous poster - you do what is right for YOU and not anybody else - in this instance nobody else's opinions matter apart from you and your partner.
I think you're doing the right thing in waiting for all the information - that's what we did - but you're also doing the right thing in considering all options to prepare yourself.

Anyone criticising should stop and realise that this isn't a quick and easy "out" - no one with a much wanted pregnancy would consider it without thinking long and hard - and even if people do make that choice, the choice exists for a reason and it's nobody's business but the people it's actually happening to.

Having been through it myself, it makes me so cross when people are so quick to judge.

Stay as strong as you can OP, whatever happens I promise you will get through this xx

Sorry, I don't think I phrased the above very well - the "out" wasn't mean to imply thats the way you're looking at it OP of course, but the way others can make it sound when they judge.

So sorry you're going through this. Sending love