Combatting the Termination Rate in Irish Babies with Downs Syndrome

After learning about the shockingly high termination rate for foetuses with Down Syndrome in the U.K., Iceland and Scandinavian countries, last weekend allowed us to finally discover what the dreaded percentage was for Irish foetuses.

The figure came from Doctor Peter McParland, the director of Foetal Maternal Medicine at the National Maternity Hospital. He was speaking at a meeting of the citizen’s assembly, a group of 99 men and women from all over Ireland tasked with debating issues that will affect all Irish citizens. One of these issues is the contentious 8th amendment, which was inserted into the Irish constitution in 1983 and protects the right to life of the unborn by equating its life with that of its mother. It sounds crazy, that an unborn foetus who is dependent on its mother for survival should get the same status as a living, breathing human being but that is the case here in Ireland. It is a dangerous amendment which ties the hands of medical professionals and has caused nightmarish scenarios resulting in the death of pregnant women. In some extreme cases, it has caused women to become grotesque incubators for their babies once their own hearts have stopped beating.

I was skeptical of the Citizens Assembly as I’ve always thought it was a pointless exercise in kicking the can down the road. There seems to be a sizeable proportion of our society who are demanding that the 8th amendment be dismantled. However, the ensuing conversations can only be thought of as helpful. It has brought the Irish termination rate into the open for the first time. It currently stands at 30%. That’s 3 out of 10 Irish couples who had to make the agonising decision to travel to a foreign country and end their respective pregnancies because they couldn’t cope with raising a child with Down syndrome.

Now those of us in the Down syndrome community have a starting point. Now we have something to work towards changing, though (and I cannot stress this enough) not by seeking to protect the 8th amendment. Perhaps you are pro-life and reading this and wondering how I could be advocating for a repeal of the 8th? Doesn’t a 30% termination rate for foetuses with Down’s syndrome make me sad? Of course it does but here’s the kicker-would my wonderful daughter still be here if abortion was available in Ireland and we knew of her diagnosis before birth? It’s possible. I refer you to the comments I received from the medical professionals who brought her into the world:

“I wish I had better news, but I’m afraid your baby has Down’s syndrome”.

“I’m so sorry.”

“Do you need me to set up an appointment with the social worker?”

Add to this a recent report in the Irish Times which stated that Irish women are being advised to have babies younger in order to avoid chromosomal anomalies such as Down’s syndrome. If this is the message women are receiving with a diagnosis of Down syndrome, it’s no wonder some are choosing to terminate. Well, here is our base point. Here is our opportunity to change this. To take that 30% and work on getting it lower. We can do better.

So, for those of you who are against the repeal of the 8th amendment, we in the Down syndrome community don’t need your righteous indignation as you denounce the desperate decisions of desperate people. We need your help to change their misconceptions but in order to do that we need resources. At present, those of us connected with the Galway branch of Down Syndrome Ireland are trying to establish a centre for the people of Galway city and county who have been affected by Down syndrome. Such a resource would be a dream-imagine a place where new parents could drop in for a cuppa and some reassuring words. Where children could avail of desperately needed therapies without having to hand over a sizeable chunk of their hard earned cash. A place where we can educate and support; a base where we can work together towards a more inclusive society, where a low IQ isn’t something to fear.

U.K., Iceland and Scandinavian countries, last weekend allowed us to finally discover what the dreaded percentage was for Irish foetuses. The figure came from Doctor Peter McParland, the director of Foetal Maternal Medicine at the National Maternity Hospital. He was speaking at a meeting of the citizen’s assembly, a group of 99 men and women from all over Ireland tasked with debating issues that will affect all Irish citizens. One of these issues is the contentious 8th amendment, which was inserted into the Irish constitution in 1983 and protects the right to life of the unborn by equating its life with that of its mother. It sounds crazy, that an unborn foetus who is dependent on its mother for survival should get the same status as a living, breathing human being but that is the case here in Ireland. It is a dangerous amendment which ties the hands of medical professionals and has caused nightmarish scenarios resulting in the death of pregnant women. In some extreme cases, it has caused women to become grotesque incubators for their babies once their own hearts have stopped beating.

I was skeptical of the Citizens Assembly as I’ve always thought it was a pointless exercise in kicking the can down the road. There seems to be a sizeable proportion of our society who are demanding that the 8th amendment be dismantled. However, the ensuing conversations can only be thought of as helpful. It has brought the Irish termination rate into the open for the first time. It currently stands at 30%. That’s 3 out of 10 Irish couples who had to make the agonising decision to travel to a foreign country and end their respective pregnancies because they couldn’t cope with raising a child with Down syndrome.

Now those of us in the Down syndrome community have a starting point. Now we have something to work towards changing, though (and I cannot stress this enough) not by seeking to protect the 8th amendment. Perhaps you are pro-life and reading this and wondering how I could be advocating for a repeal of the 8th? Doesn’t a 30% termination rate for foetuses with Down’s syndrome make me sad? Of course it does but here’s the kicker-would my wonderful daughter still be here if abortion was available in Ireland and we knew of her diagnosis before birth? It’s possible. I refer you to the comments I received from the medical professionals who brought her into the world:

“I wish I had better news, but I’m afraid your baby has Down’s syndrome”.

“I’m so sorry.”

“Do you need me to set up an appointment with the social worker?”

Add to this a recent report in the Irish Times which stated that Irish women are being advised to have babies younger in order to avoid chromosomal anomalies such as Down’s syndrome. If this is the message women are receiving with a diagnosis of Down syndrome, it’s no wonder some are choosing to terminate. Well, here is our base point. Here is our opportunity to change this. To take that 30% and work on getting it lower. We can do better.

So, for those of you who are against the repeal of the 8th amendment, we in the Down syndrome community don’t need your righteous indignation as you denounce the desperate decisions of desperate people. We need your help to change their misconceptions but in order to do that we need resources. At present, those of us connected with the Galway branch of Down Syndrome Ireland are trying to establish a centre for the people of Galway city and county who have been affected by Down syndrome. Such a resource would be a dream-imagine a place where new parents could drop in for a cuppa and some reassuring words. Where children could avail of desperately needed therapies without having to hand over a sizeable chunk of their hard earned cash. A place where we can educate and support; a base where we can work together towards a more inclusive society, where a low IQ isn’t something to fear.

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I am pro-choice and a woman’s right to choose is vital. I’ve said it before, but a woman is more than the sum of her reproductive parts. The decision to choose is vital, but she has to get all the information, not outdated advice. Similarly, I want both my daughters to lead as independent and full a life as possible, which includes the freedom to love who they want and have control over their own bodies.

I’ll do what I can here to show what life is really like to raise a child with Down syndrome. It’s an amazing gig but I’m not denying it’s tough at times. Their brains are wired a little differently to those without the syndrome and we don’t yet have all the answers as to have we can help them, which is why we need practical help, rather than emotional outrage. For as we help them, we help ourselves and we have much to learn from those who are different to us. Scientists are discovering more and more about Alzheimer’s as a result of longer life spans for those with Down syndrome because this disease originates where? You guessed it-on the 21st chromosome. But we need this change to come from all of us. Because unless we start to do that, we are failing. Failing our citizens, young, old and unborn alike. Women will continue to choose abortion over life with a child with Down syndrome. And no amount of enshrining in our constitution or righteous indignation will change this.

Twin Mummy and Daddy

 

 

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