Monday, 10 June 2013

What if... it had been a Downs syndrome baby?

I've just found out a friend, who is 19 weeks pregnant, has received much anticipated great news. Her amnio result is negative. She was given a 1: 22 chance of her baby having Downs syndrome. 

It has been a period of waiting ever since she found out she was pregnant. After waiting for her 12 week scan, with complete intrepidation that there maybe more than one baby (she was on Clomid), she then had to wait the further time frame for the amnio due to the high risk, and then had to wait over a week for the result. 

She has handled it all brilliantly given the situation. Knowing she would have chosen to abort if it had been Downs was a conversation we had. No matter what degree of severity, she would have chosen to take drugs to stimulate labour and terminate the pregnancy; the baby. A much longed for sibling of an about to turn five-year-old sister. 

I could only imagine the internal battle my friend was having - her head saying don't connect with this baby - it may not be for keeps. Her heart telling her not to listen to such nonsense, to bond with the babe within. And with all her motherly might. 




But what's right and what's wrong? Are you purely stuck in a place of damned if you do and damned if you don't? I can just about understand why she would have terminated. I think. I may even have done the self same thing. But who knows? How can I without being in the position of carrying a baby that potentially has Downs syndrome? Thankfully, I don't have to make this choice. 

I do wonder this though? If you choose to terminate, could you live with yourself afterwards? Would your sleep not be plagued with overwhelming loss and grief; your conscious left struggling forever. 

I wonder how you'd manage to continue to carry a Downs baby without becoming so overwhelmed by the thought of it having a potentially life changing disability. And that which has a knock on effect for all the family. The father already in his fifties. Mother in her forties - as is quite the norm today. Who would be left to look after this person? Its sister? What sort of life is that for her? But then, how could you decide to abort? What gives you that right? 

When I trained as a nursery nurse, my absolutely best ever all time favourite work placement was in a special needs nursery. I bonded with one little Downs girl in particular. I will never forget the joy she brought me, a then 17-year-old student, training on the job. 

Downs syndrome children have weak chests and are prone to all manner of bronchial illness. They are also incredibly affectionate. This little one had a bad cold, the sort where permanent train tracks of snot conjoin nose and mouth. Her glasses were skewed; barely on. Her knotted hair wild. Her smile massive. She was deaf. But as I hammered on the floor in front of the tunnel that she motored through, she felt the vibration. She looked up at me. Her smile enlarged. The gap between us closed. She reached me. She threw herself upon me. Laughing. Hugging. Holding me close. She pulled her head back to look into my eyes. To check I laughed too. As she did so, the spaghetti string of snot, stretched out bridging the two of us. Her world, her silent world, was loud, noisy and full to the brim with happiness. As I have no doubt was the very same world of her selfless parents?

13 comments:

Nichola Fabfortymum said...

It's such a tough decision to make and definitely one that I think there is no right or wrong answer to. Each family must do what they feel is right for them.

I am that older mother with an even older husband and having suffered so many years of infertility was in the very risk category. In Northern Ireland we don't have NT scans to check for Downs, we are however offered the triple tests. I turned them down, for a few reasons. Even if they had come back telling me the baby had Downs, termination is illegal here (unless the mother's life is at risk).

I knew in my heart that personally, I could never terminate anyway, I couldn't travel to England for a termination, my heart and soul would never have let me. We decided to let nature give us the baby we were intended to have, no matter the outcome.

We were very very fortunate, both our girls were fine, despite the high risk odds, but for me personally, they would have been my perfect babies no matter what. xx

Emma Oliver said...

Nichola - I really appreciate your comment on this post. It was meant to be thought-provoking and I was hoping it would give rise to a few more comments. I think the subject is difficult, emotionally and metaphorically. But I'm going to put it on #PoCoLo this week to see if I can raise a few more voices. I'm interested on where people stand.

The fact that you begin with saying there is no right or wrong answer is key. And then, we cannot judge. For unless we were in that self same position, how could we know what we'd do?

You seem to know. And having been through the high risks, you and your husband were fortunately blessed with healthy babies.

I think you were incredibly brave. As you also were for writing this comment. Thank you for sharing. x

keren said...

A really thoughtful post. I guess I stand at one particular end. Morally and spiritually I couldn't make a decision to end a life because of disability which is why I refused antenatal testing other than the normal scans. I do see that it's a really difficult issue for people to think about. Having had 3 miscarriages, lost one child and another with mild disability I just don't see that the decision is mine to make. I realise so many won't agree with me but you wanted opinions. One of the most moving books I ever read was from a mum with a baby with a condition so life limiting that it wasn't expected to survive. Her book described her and her families reactions and struggle and subsequent birth and death of her daughter. She would say she wouldn't have done it differently and I am I awe of how she handled it all. My issue is less with individuals decisions per se but generally society's seeming lack of value placed on kids with disabilities. I hope I haven't offended anyone- just wanted to add my perspective!

Galina Varese said...

When I was pregnant with our 2nd child, I was considered an older mother (42), and was told that my chances of having a child with a Down's sundrome are higher. I said that if the scan showed any signs I might have a child with this condition, I would refuse to have an amnio, as the termination would not have been an option for me, I could not live with it. having a child with special needs is not the end of the world, my older son developed autism later in life. It is very tough, noone says it is easy, but I would not have done the termination. Saying that, I would never condemn anyone who makes this decision.

anna said...

In a way I don't really understand the emphasis on Down syndrome testing antenatally, there are a lot of disabilities and ones which you can't find out about antenatally but you almost get the impression that people feel if they get the all clear on the downs tests then their child will definitely be healthy?? I feel I can say with definite, I would not ever terminate a pregnancy because of the child having down syndrome. I have a child with autism and various other conditions. As a parent you don't know what challenges lie ahead with your children. To me, loving them and getting on with it anyway is part of being their parent rather than just opting out. I don't mean to be offensive to anyone, but what if people do all these tests and then they think okay great, child is healthy - and still later they find out their child has something like Autism which cant be detected pre birth, or learning difficulties which cant be detected?? then what?? that's why I kind of don't get this emphasis from some people on we wont continue the pregnancy if the baby may have down syndrome. Obviously its not easy to think that your child may have special needs or disabilities. I know that from my own experience - but parenting isnt easy and this is just part of it

Tori Wel said...

This is a post that is VERY close to my heart and I know one day that I may have to write something similar. I was forced into a termination by my ex. At that time I didn't know about the balanced translocation of chromosomes that affected some of my siblings - me included. My termination took place on 2/01/98. Grace was born EXACTLY 9 years later. Before I had Grace, my sister had a little boy who is now disabled due to an unbalanced chromosome. I see the difficulties she goes through. When I was pregnant I had to have a CVS to find out about my babies chromosomes - thankfully Grace was fine. But I know the difficulties and heartbreak that my sister goes through. If the time comes to make that decision about what to do about an unborn disabled child then I know I shall make the right one. Thank you so much for linking this post to PoCoLo x

Judith Kingston said...

Wow, a very emotional subject indeed. I too would never terminate a pregnancy. With my first, we found out I was pregnant when it was too late for the nuchal fold scan. we were offered the triple test but said we didn't want to know. I do believe God knows what you can handle. And also, children with Down's syndrome have serious health issues, but they are absolutely lovely. I would never belittle or underestimate the incredible amount of work and heart ache that goes into looking after a child with a disability, but they are still your child.

That said, I do know someone who made the opposite decision, after a lot of soul searching, and it was heart breaking. I wouldn't dream of heaping judgement or condemnation on her - only she could make that decision based on her situation.

Emma Oliver said...

This post certainly gathered a lot of attention in the end. It was even featured on Parentdish. I hope I made a few people think. Thank you to those of you who did leave comments. It would appear you all share the common bond of not being able to terminate a baby you've been blessed with. That in itself tells me that YOU are all amazing people. Thank you again for coming to read LIFE AS IT IS and for the thoughtful attention you have given this particular post.

Emma Oliver said...

They are still your child...

Emma Oliver said...

You'd imagine society would have changed by now don't you?

Emma Oliver said...

It is a decision for each parent to decide themselves that is for sure. Everyone's circumstances differ. Personally, I do not think we can judge...

Emma Oliver said...

I agree Anna, I don't understand why there is an emphasis on Downs...

Emma Oliver said...

Vicky, 9 years on exactly, is all rather precise huh?! You have obviously suffered. To be forced into a termination by your ex, must have been horrendous. I can only imagine the grief... what a way to have started 1998. I am so happy that Grace was born on the same day, so that you could always celebrate the start to your year's thereafter. And I get why you called her Grace. I wish you all the best for any more babies that may come along x