Termination of pregnancy at 24 weeks due to heart defect

[Lifehasitsproblems]

I live with this every day. 13 years ago at my 20 week scan I was told there was an echo on the baby's heart but that there was nothing to worry about. I had a three year old boy at the time and this was a much wanted second child. My gp suggested going for a private scan at the fetal medical centre to get a better understanding of what was happening. I was told that the baby, a boy, had transposition of the great arteries. In the womb he would be fine because he was receiving all the oxygen he needed from the umbilical chord but when he was born he would need key hole surgery followed by open heart surgery followed by regular further operation(s) on his heart to deal with scar tissue etc. He had a 59% chance of living to age 16. There was no guarantee of the quality of life he would have assuming he lived to 16 and beyond.

At 24 weeks (it took almost four weeks to get the appointment for the private scan and i needed a few days to make the decision) on Mothers Day, as it happened, I was taken for a final scan where they injected the baby's heart to stop it then induced me so that I gave birth.

The baby was tiny but perfectly formed to look at. We gave him a name and dressed him and ultimately we buried him.

My son who was three at the time vaguely remembers the little brother he lost. One of the biggest factors in making the decision was that I couldn't bear for my existing son to lose his brother. WIBU

[onalongsabbatical]

Petmalex been thinking about you today. Hope you're ok and some of the posts not too upsetting. People lose sight of what's ok to say and when to say and not say things I'm afraid. But this - One thing I do know is all the babies who's mums made the decision not to carry them to term spent their little lives knowing nothing but their mothers love and protection ❤️ seems to me to completely true. Take very, very good care of yourself.
sosks I remember your threads about Henry. Bless you, I hope you're ok.
for all and anyone going through this. Lovely kind compassionate loving mummies, all of you, whatever you had to decide.

[mastershelp]

Thinking of you OP and everyone else who has been in this situation

This is a very emotive topic, can I remind everyone that everyone makes the decision hat they think is best. I chose to continue on with the pregnancy and have never regretted it. I don't think that makes me selfish or inflicting a terrible life upon my child, or loving my child less than a mother who chose to terminate, as some posters have suggested.

[theymademejoin]

@mastershelp and others who continued with the pregnancy - your decision was just as difficult and just as loving as those who choose to terminate. In some ways I was lucky. My son had a condition that meant he would not survive outside the womb so at best, he would have been born and then we would have had to watch him die within a minute or two.

Those of you who are given percentages and told there is x% chance of survival until a particular age or y% of babies with that condition have a difficult, painful life etc., have a much more difficult decision to make as, like the op, you are more likely to feel guilt and doubt.

I think it is really brave of you to make the decision to continue with the pregnancy and I think it is very brave of those who terminated to make that decision. The decision is made with love and with the best interest of your child at heart. Nobody could ask any more of a parent.

[sosks]

@theymademejoin For me it was a rare genetic condition they believe inherited recessively through myself and my ex. They couldn't prove it wasn't a randomly inherited mutation so our chances would have been 3%-25% of recurrence. As he's now my ex, I hope that chance is now much lower. I'd love to have more kids more than anything, it's something I'm struggling a lot with right now.

@onalongsabbatical thank you I've been struggling a lot lately, but I'm sure I'll get there. Just have to keep remembering why I fought so hard in the first place.

[theymademejoin]

@sosks - hopefully it will be and you will go on to have children. If it's a rare recessive condition it's unlikely you would end up with a second partner with it. Can he be tested for it, to put your mind at rest?

Wishing you all the best.

[onalongsabbatical]

@sosks Glad to see you can smile! I hope you get what you want you certainly deserve it after all you’ve been though. Very best of luck for the future.

[sosks]

@theymademejoin they don't actually know what genes caused it so afraid testing is a no go but they've promised early scans in the future. Not an ideal solution but it is really unlikely to happen again, it was incredibly unlikely to happen in the first place as it's that rare. I'd like to think I'm not that unlucky! Thank you though I really hope good things come my way too, it's been a hell of a few years and I feel grateful I'm even still here to be honest.

[sosks]

meant to tag @onalongsabbatical too! sorry about that, but thank you again to both of you I really appreciate it.

[theymademejoin]

@sosks - I had early scans too and all was fine. For me, early scans would have allowed in-utero surgery with a reasonable chance of success, so a bit different to your situation.

The condition mine had is only sometimes hereditary so after 3 more, I presumed it was random. However, my cousin's child ended up with a variant of the condition (not fatal in his case) that required surgery after birth. So I'm now reckoning it might have been hereditary. So even if it's hereditary, the odds are still in your favour

[Aylarose]

You made a decision to prevent the suffering that both your DS and the baby would have experienced throughout their lives because you loved them.

It sounds like a very sound decision.

Grief counselling might help.

[sosks]

@theymademejoin I'm glad it all turned out well for you eventually. It feels like a lifetime away for me that I'll finally have living kids of my own, but I'm sure it will be worth it. I just wish Henry could have been one of them!

[Yura]

i'm so sorry!
I have a friend whose youngest had a heart condition (loads of surgeries, but survuval to adulthood chances were around 80%, so a lot higher). the family have been through hell more often than i can count, the older sistef basically hadvto stop veing a child aged 4. Their journey ended well for the younger child (he's ok now), but the sister really, really suffered.
there is no right or wrong, both choices are incredibly hard and painful for the parents. you did protect both of your children from a lot of pain, but your pain must be incredible

[AvoidingDM]

Petmalex. I've no advice to give but you are going through a horrendous time. I hope you are ok. Be gentle on yourself