I’m normally very apprehensive about discussing things that come under the umbrella of abortion/termination, termination for medical reasons and antenatal testing because we chose to continue our pregnancy knowing our baby had Downs syndrome. I worry people might assume I feel a certain way about the subject and that the decision we make extends to the world around us. However, our journey to that decision was not straight forwards. I’m still trying to process our experience three years later and although this may not be terribly coherent I really wanted to put some words down today as Ireland vote to repeal the 8th.
We chose to continue our pregnancy knowing our baby had Downs syndrome. That was the right decision for us, for me, for our life. However, I am passionately pro-choice and although I’ll admit I do sometimes struggle with the knowledge that 99% of pregnancies affected by Downs syndrome are terminated, I really believe that informed choice is vital and everyone is entitled to access safe, basic healthcare. My discomfort with knowing so many DS affected pregnancies are terminated does not come from a place of believing those parents are making the wrong choice, it comes from a far more personal place. The undertone of so much change surrounding antenatal testing which again, I am in full support of because everyone has the right to an informed choice with no judgement, is that a life with Downs syndrome has no value and and a person with Downs syndrome has no place in our society. That my son’s life had no value, that he had no place in our society. That the fact he died was probably for the best.
I’m sure the number of people who truly believe that are very, very far and few between but they are still there. There are some in my life, albeit on the outskirts but they still exist. I’ve had healthcare professionals say to me in as many words that his death was nature’s way of making our life easier. I’ve had people close to me suggest that ‘perfect’ babies do not deserve to die but my baby wasn’t perfect so maybe it was ‘for the best’. As you can imagine that is incredibly painful to hear.
This is why I tend to step backwards around the topic of termination but with Ireland voting to decriminalise abortion and make full reproductive healthcare, including abortion, available to everyone today feels like the very best day to step forwards, because our story wasn’t as simple as that one decision to continue. Infact, the week before, we had made the decision to end our pregnancy.
If you’ve been following me for a while you might have read our diagnosis story (if you haven’t, here is part one
and part two
) where I went through the process of finding out Aneurin had Downs syndrome. Before we had the results that showed the extra chromosome on pair 21, we were told he had a different chromosomal condition, Trisomy 18, Edwards syndrome; one that was incompatible with life. Downs syndrome was never mentioned, only Edwards. And the way it was laid out to us, three years ago tomorrow, was very, very bleak. We were told if our baby survived birth he would die shortly after. That he would be very, very ill with no quality of life and if by some miracle he lived longer than a day he would never make it to childhood. We were told that we had a decision to make and in the three excruciatingly long days we spent at home waiting for the results, we made that decision. We decided we would end our pregnancy.
I’m not sure I’ve ever talked about this part of our diagnosis process before. When I wrote it all down three years ago it was still so raw and so intense that that part of it didn’t seem to matter. It had paled into insignificance to the diagnosis of Downs syndrome and the utter whirlwind of the weeks that followed. It feels like it matters now though. Not just because I am slowly learning to accept the impact these episodes of trauma have had on me, but because today Ireland are voting on whether or not women will get that choice of making the decision no mother ever wants to make. Terminations happen whether they’re legal or not. Nobody should be forced to continue with an unwanted or very wanted but not viable pregnancy. We decided that with the choice of ending the pregnancy, our baby feeling no pain and being able to spend time with him or continuing, having longer with him but knowing that if he were born alive there would be no time frame for his death, that we would just have to wait for it to happen, the latter just felt too difficult and too painful for us. That was our informed choice and had we have had to follow through with that choice, it would have been respected and our wishes carried out with dignity and respect for us and our baby. The idea of being forced to carry a baby for months knowing the outcome is never going to be the one you want is horrific. Nobody should be made to do that.
It might feel as though you cannot do much if you’re not eligible to vote in Ireland but there are a few ways in which you can help. You can donate to the Abortion Support Network
, support the Together4Yes
campaign, share information about the campaign or write to your local MP to urge them to support the change for the abortion laws in Northern Ireland where it is still incredibly difficult to access safe abortion.
Here’s hoping today is the start of a new chapter for the women of Ireland.