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
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Termination of pregnancy at 24 weeks due to heart defect
Lifehasitsproblems · 14/10/2017 22:55
so sorry for your loss op, you made the best decision you could at the time
OP I went through a very similar thing with my 1st baby 19 years ago. At the 20 week scan they told us his brain hasn't formed properly and, in the words of the heartless consultant, 'he wasn't compatible with life'. It was heartbreaking, and we spent a long couple of weeks having extra tests and trying to decide what to do. I knew I couldn't go through with the rest of the pregnancy knowing he wouldn't survive, so I was induced and have birth to our beautiful baby boy. His face hadn't formed properly either. It's the worst thing I've ever gone through and I've beat myself up over it ever since. Just know that you are not alone
Sometimes we have to take very hard decisions in life - and you bravely took this on. I admire you.
You did what you thought best
My DS was born with transposition of the great arteries, he had a small heart surgery when he was a few hours old then his big open heart surgery when he was two weeks old and spend first two months in hospital. He'll be 8 tomorrow and he's a healthy little boy now, at his last app his cardiologist said his heart sounded 'almost' like a healthy heart which is the best outcome possible and there is no reason he won't live a normal healthy life. I'm a bit shocked and saddened that only 13 years ago his outcome could've been very different.
I can only imagine what you have been through and I really think I would have made the same decision.
you are not, and were not, BU.
Sending you love and strength. What a heartbreaking decision to have to make.
You did just fine. I hope you find peace, it sounds like it's haunted you since
i lost my only grandchild when his parents had to make a decision similar to the Op's.
This was the one and only much longed for baby and their pain was unimaginable. They did not want anyone to know of their decision in case of criticism and judgment.
With them there was never going to be any happy outcome and to continue with the pregnancy was to prolong the agony.
for those who have been through similar.
Hi there. I'm new here and wanted to share because it's been a relief to find someone who has been through what is happening to me right now. I am due to deliver tomorrow at 22+2 due to avsd and hypoplastic right syndrome but no chromosomal abnormalities. My decision was based on exactly the same as yours. Baby would have a lifetime of heart operations with no guarantee of a decent quality of life. How could I let that happen when I had the choice not to allow it? I have wanted a baby for as long as I can remember and I never thought I'd ever have to make this horrific decision. Thank you for sharing your story even though it was some time ago so I'm sorry for raising it again. But it has allowed me to read your story now when I've needed it most. Thank you
Op...that was a very courageous act of motherly love for both of your sons
You are definitely not unreasonable and I actually would make the same choice in your shoes. It's still a hard decision and one that will live with you forever. But you weren't wrong.
No one should ever judge you for what you decided . The walk a mile in my shoes applies here.
I have no doubt neither was an easy road to travel.
What an awful time for you and horrendously difficult decision to be faced with.
Of course you were not in the wrong.
You chose to think of your sons future and what it could entail for him and for your other son too and chose not to allow either of them to suffer, what more could be asked of a parent? What could be a more loving decision?
A parent should never have to bury their child and having to make that decision yourself is beyond horrifying.
So sorry for your loss.
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