My DS was diagnosed with a severe cardiac abnormality at the 20 week scan. Which wasn’t actually done at 20 weeks on the dot. It looked potentially surgically treatable but the pattern was associated with various genetic diagnoses including Downs, Edwards and Patau’s and also syndromes that cause severe psychological distress and schizophrenia such as DiGeorge’s. I then had an amniocentesis. I didn’t get the results back until 23+6. This was an IVF pregnancy with genetic testing to avoid the baby having the condition my son already has.
I elected to continue the pregnancy. I had a further scan at 32 weeks - it was now beginning to seem less likely they could achieve the really good surgical repair and may need to consider a series of many surgeries which might buy some years but would eventually fail. I was offered termination again, came back to see cardiologist again to rediscuss all the information as it had been so much to take in. I felt completely paralysed and unable to make a decision. They could offer me a termination at 33+5. It was utterly heartbreaking and there was a lot of uncertainty about the information I was given because they simply just couldn’t know.
We have no local family and all of the surgical treatment and hospital stays would need to take place in a hospital in a different city.
These situations are vanishingly rare and exceedingly painful. If you look at the ONS from 2020 there were something like 200,000 terminations and only 280 were above even 21 weeks. Nobody is making that decision lightly and frivolously. Support for being able to physically care for these children is variable and some of the pain they may ensure may be absolutely enormous.
I didn’t have the termination but I am so very very grateful that I live somewhere where there are options and I wasn’t judged.
When I was reading about it during the decision making process I read many accounts from women who live in the US, some of whom had babies that weren’t even going to survive, who to access termination were having to fly out of area to clinics surrounded by crazy high security with angry protesters outside, costing them easily $15,000 dollars. Making this completely inaccessible to poorer women who would also be the least well equipped to be able to care for a seriously ill child, particularly in the US where they quite possibly couldn’t even access the healthcare. And for all of those women this seemed out of this world cruel when they were already in a world of pure pain and torture.
It’s not happening with any regularity, it’s always complicated, painful and horrible and I really don’t think there’s a place for using these rare cases for generalised moral and political debate. Although I didn’t have the abortion I now feel even more strongly that the law should remain as it is.