Abortion for fetal anomaly at 21 weeks

[Bobbelle]

Hi, I have had the devestaing news that my baby boy has severe hypoplastic left heart syndrome and have made the decision that it would be best for him to terminate the pregnancy. I think I will be just over 21 weeks when this happens.

I am in Scotland and have been told I would need to travel to England for a surgical termination as these are not done in Scotland at this stage. I can't imagine how I could cope with a medical termination at this late stage. Has anyone been through a similar situation that could give any advice? I desperately just want to be out to sleep and for this part of my nightmare to be done

As I type this I can feel my baby moving and kicking. Knowing I will never hold him and look into his eye is breaking my heart. How can I survive the next few days being so close to him but knowing I will never have a chance to meet him?

I don’t know what to say but just wanted you to know I think you’re really brave, it’s an incredibly difficult decision but I think in your situation I would do the same. Obviously I have no idea how you’re feeling but I hope your partner and family are supporting you and do get some counselling if you need it as it must be so hard. Big mumsnet hug

The majority of kids with HPLHS now reach adulthood, with many living a normal life. Are you sure you want to terminate? Odds on your baby will be ok.

Havelock, I have read the odds. I am aware of the surgeries required, the chance of survival after each, the heart transplants and the potential for further complications as a result. They are not in any way positive statistics or outcomes and are not OK. I am not here to discuss my decision, the life my child would have is not one I would bring him into

Thank you Napqueen, it has been the most awful few days and I appreciate your care ❤️

I'm really sorry to hear this. I believe you will need to be awake to deliver as c sections are dangerous this early in pregnancy. You will get to meet him he will just be born sleeping, but you love him so much that you are taking his pain away from him. Speak to SANDS, they will have so much more information. I'm so sorry, I have had a baby born sleeping.

I found ARC amazing. They have excellent information once you have made your decision.
I was 13 weeks and had to deliver. Hardest thing I ever did in many ways
Even now I remember the smell of the ward and the details. Staff were amazing
Take care

I have been where you are.
Different reasons , but same decision reached.
I won't lie, it's incredibly difficult but it was not a choice we made lightly.
We missed a nuchal scan at 13 weeks due to bad medical advice, and got run down at a scan at 19 weeks with multiple , serious defects.
My life was at risk, no hospital near me ( rural Australia) could monitor for the pregnancy or care for the baby if it or I survived. If the baby survived , the care needed would be extreme and survival would be less than a year. Faced with the choice of leaving my home, husband and living in a hospital hours away for months with my older child, and giving birth ( maybe) to a child whose life would be all pain and brief, I chose to end the pregnancy.
I had to deliver the baby while awake, but they were very generous with gas, air and medications. I required additional surgery afterwards due to the poor state of the placenta ( which had been part of the problem). It's incredibly difficult, and I bundled myself off away for a few days later just to deal with it all.

I send you much love. I know this is a bitch of choice. But you know what is right for you, and what you are able to cope with.

I am sorry. It’s a horrible situation to find yourself in.
Are they definitely saying surgery? Quite often they stop your babies heart beating with an injection and then induce labour at this stage.
That sounds unimaginable but can allow time to say goodbye in a special suite on the maternity unit. Often the injection is given at a specialist centre but the termination is completed at a local maternity unit.

Do you have real life support? You’ll need someone to help you get through this. The waiting will be hard. Harder than anything you’ve done but you will get through it. I had three very late losses but went on to have a beautiful healthy baby. One of my staff was in a similar situation to you and went through a really hard year. Then she became pregnant again and was terrified until the baby was in her arms. She’s now a mother to two little ones and is able to talk about her other child with sadness but knowing life got better and she coped.

Do you have a name. A file of memories can help but often not thought about until it’s too late. Photos of a pregnant you. Scans. Maternity record. Then some choose photos of the baby after delivery. The midwives can help the baby’s look beautiful and take a photo along with handprints and footprints. Very hard to think about these now but hopefully you’ll be asked. Even if you have surgery you can ask to meet them, hold them and have a funeral. It is heartbreaking but so is watching your child in pain after complex surgery. Watching them struggle to breath. Seeing them always ill and worrying every time someone close to you gets a cold.
You will get through.

I'm so sorry.
I had a tfmr (termination for medical reasons) earlier this year at 18 w. My baby had Downs plus heart and other organ abnormalities. You don't have to justify yourself. Anyone in our situation only acts to spare their child and family from suffering.

TBh giving birth to him helped with our healing. We got to see and hold him, to kiss him and to say what we needed to say. This is such a horrible situation, but the grief has to be gone through before you can come out the other side. The memories of seeing my little baby being tears, but also a sense of peace. It's not for everyone, and you must do what feels right to you of course.

ARC-UK can provide excellent support and information. There are also posters on the antenatal tests section here with similar experiences.

You do know that most babies survive this condition don't you?
My cousins baby is just about to turn 2. They advised her to terminate. Apart from his two operations he has been absolutely fine. He has reached all his milestones and has an amazing quality of life.

I do understand where you are though. My sister had a termination due to her baby having Edwards syndrome. I supported her through it.

Have the hospital offered you counselling? My sister found it helped her and she also was put in contact with local mums who had been through the same as her.

OP.

The prognosis is a lot more variable than a PP suggested - sometimes surgery can be successful, sometimes a child then goes on to need a transplant, sometimes the condition is inoperable. I have friends who carried a baby to term with this, and it turned out in their case the blood vessels were in too much of a mess to operate successfully, and their DS died after only 24 hours.

So I totally support your decision. I'd make the same one.

It's awful that you have to travel to England for it.

I’m sorry you’re having to go through this @Bobbelle

FWIW, there’s one thing I’ve never forgotten from a Great Ormond Street documentary years ago, specifically about heart surgery. A surgeon talked about the massive leaps forward over the last 10-15 years. Children with heart defects previously considered inoperable were now not dying at birth... but the price paid was that these children were likely to live limited lives (literally, in terms of time, and also limited in what they could do physically) with long stays in hospital, with repeated surgeries and pain, with no guarantee that they’d reach adulthood, or their teens even. There was a boy featured who’d had successfully surgery at birth but reached the end of the line aged ten.

I’ve never forgotten that. I certainly believed at the time that I would not choose that life for my child, and I’m very fortunate not to have had to make that choice.

I totally understand why you’ve made your choice.

I'm so sorry, OP.

I was in a similar situation earlier this year. I had a TFMR at 20 weeks as my baby had Edwards syndrome
I felt the same as you, just wanted to go to sleep and wake up when it was all over. I’m in Scotland too so it wasn’t an option. When I was discussing my options with the peri-natal midwife, she explained that having an an induction and giving birth vaginally posed the least risk to me and any future pregnancy. If you give birth vaginally, it also means you are able to see and hold your baby afterwards, something that is not possible if you go down the surgical route. Being able to see your baby and take pictures with them is something that may help you with the grieving process.
I’d second the advice of getting in touch with ARC, they are specialists in this field.
It really is a truly horrendous experience and I’m so so sorry that you’re going through this. I’m happy to chat a bit more or answer any questions you might want to ask xx

I’m so sorry OP.

FWIW I work a lot with women in your position. Many of them of course dread the process but end up valuing the labour and delivery. They are able to hold and kiss their babies and say goodbye. It closes the loop. It’s hard to organise a surgical but when I have, occasionally women do regret it. It’s a two day procedure at that stage so not as quick as earlier surgicals.

Of course I am sure you’ve had all the information and this is the best choice for you. X

I'm so sorry OP, it's absolutely devastating.

I would agree with contacting Antenatal Results and Choices (ARC). They will provide you with a listening ear, impartial advice and guidance about practicalities and also offer support during your grief.

Look after yourself.

I just wanted to say I'm really sorry and that I think you're really brave.

Take care of yourself

I had a TFMR at 23 weeks. Induction and delivered, surreal experience with the maximum pain relief available. I have had 2 healthy children since. Midwife and medical team were amazing. Not an easy time for myself, my family or I expect the medics that cared for me. You are in my thoughts, I wouldn’t wish it on my worst enemy.