Downs Syndrome: what would you have done?

I have just been watching my favourite soap, my indulgence, my little fix of Yorkshire now that I live “Down South”: Emmerdale.

One of the storylines has been about a mother-to-be being told she is carrying a child with Downs Syndrome. And it brings back to me very vividly this time five years ago when I was told that I too could be carrying a child with Down's syndrome.

I got a call on a Sunday afternoon from the Midwife to tell me that my tests, the ones you do without really thinking these days, had come back and that I had a very high probability that my child could have Down’s syndrome. I was 39 years old, a geriatric mother in medical parlance I had a history of miscarriages but was blessed with one beautiful son already.

I was advised to go to the hospital to discuss the problem. I noted than that this was a “problem” and something at the back of my mind twitched. I don’t do “problems” and I don’t do the medical profession every much either so two of my greatest bug bears were about to collide.

We went to the hospital concerned as might be expected. There were loads of questions but mostly fear, fear of the unknown, fear of what will happen or not as the case maybe. I needed options.

At this stage when a mother is told the tests have come back funny, she is given another scan then off to see the consultant. The scan was reminiscent of the one where I found out that my first baby had no heartbeat and was dead and that I had been carrying it around like that for nearly two months. This scan was inconclusive but the general feeling was bad, more tests needed to be done.

We waited to see the consultant for nearly an hour; it was a busy day and there were lot of us. I remember glancing at all the women their tummy’s bulging and thinking so many “what ifs”. I couldn’t help it, my hopes were not high and I was angry, angry that it had taken me so long to get pregnant again and that it was so bloody unfair. I became very morose and scowled at anyone who caught my eye, nipping in the bud any hint of joyfulness. Several women enfolded their gravid bellies as if to protect the babies within.

Once called in fear and anger fled and I was just blank as I listened to my options. It was almost as if I really wasn’t there and I was looking down on myself. My Husband said I was very rude and I remember looking at him with hatred. “How dare he!” were my thoughts.

Patiently as if talking to a particularly thick child the consultant explained I would have to have an Amniocentesis. I think she was fairly shocked when I asked: "What are the dangers of such an invasive procedure?" I am sure she expected me to nod like a bovine and agree to anything she said. She explained that there was a 33 per cent risk that I could miscarry or as she so charmingly put it “abort” Quick as a wink I asked: "What are my chances of carrying a Down's syndrome baby?" She said 30 per cent.

The odds did not stack up. I felt under a huge amount of pressure to say there an then I would have the amnio but I refused and asked if there was anything else they could do to check, to either confirm or deny, to be sure.

There was a lot of fuss made about the fact that I was already 17 weeks gone. If I was to have a termination I had to go as early as possible I had to make decision quickly. And I did not want to. I was told that I could have a scan using their new scan machine that allowed you to look in even more detail at the unborn child but that it would not be available until the 23^rd of December when I would be 20 weeks gone. I clutched at straws and entered the worst three week of my life.

Of course I looked up and read everything I could get my hands on and of course I thought the worst. And I questioned myself deeply, laying bare just the sort of person I was. My husband couldn’t understand at first not until I started to make plain what it was we were going to have to face.

On the presumption that our worst fears came to fruition we would have to make decision quickly, decision that would affect us for the rest of our and our families lives. My husband is a half full kinda guy and he’d never really thought in these terms before.

My first worry was could I cope? I already had depression. Would this be a step to far either keeping or terminating? What were the ramifications of having a Down’s syndrome child? Were we selfish in thinking of having one? Were we bad about thinking about an abortion? What about our other child? what would he think? Could we really do this at our age knowing that quite possibly our Down’s syndrome child would outlive us and thus be a burden on his/her brother when we were no longer about?

Finding the Down’s Syndrome Association website helped enormously. It answered so many questions one I wanted and one’s I never knew I needed to ask. It made our decision easy. Whatever happened we would keep the baby, yes we were old but we were also well off. But more importantly there was a great community out there ready and willing to support us. Just as well because we called the parents both mine and his to inform them of our decision prior to the scan: their reaction horrified us. They couldn’t believe that we would even consider the task. We were called everything but stupid. I don’t think they grasped that for me having a child was not easy. For starters when they were my age their children were at university and neither of them had ever had to go through the number of miscarriages I had had. It was if we were talking to strangers.

Despite that we did not waiver. There again we were never tested. The scan showed the baby I carried did not have Down’s syndrome.

I love both my children. My angels. My blessings.