Wednesday, 15 December 2010

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 23rd 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.

18 comments:

Very Bored in Catalunya said...

A very thought provoking post, I hadn't realised the m/c rate following a amneo was so high.

I'm 39 and trying to get pregnant again following 2 m/cs it's worrying that these evasive tests are almost forced upon older mothers when they carry such risks.

Expat mum said...

When I was 5 months pregnant with one child, they found a huge "something" in his head, which they said was either indicative of Downe's or a dilated vein which meant he wouldn't live much beyond his 1st birthday. Trouble was, they couldn't be sure. We had the Downe's test and it came back negative, which for us, wasn't good news because the other option was even worse.
Termination was definitely out there, but I decided I couldn't do it based on such scant information. (Interestingly, my first thought was that I would have more children so that the older sibling wouldn't be the only one to carry any burden after we had gone.)
Anyway, it turned out that the "thing" disappeared about a month before the birth. We never did find out what it was and I never want to go through anything like that again.

legend in his own lunchtime said...

After having several miscarriages and too many invitro attempts to concieve, my wife and I decided on adoption. At 40, the risk of downs was very high, until we started using donor eggs, but i still recall the utter failure my wife thought. It was all heartbreaking.
You are a brave lady.

TheMadHouse said...

I also suffered many m/c's and chose not to have any tests for DS. We lookded at all the issues and decided that it would still be a child and we would manage

resewn sally said...

That post has brought back many memories for me. The same thing happened to me when I was pregnant with my middle son. Before I'd experienced any miscarriages. I'm eternally grateful that it turned out the silly doctor had just done the test too early. We had just decided to carry on with the pregnancy when we found out. Well I had. My partner didn't think we'd cope. But I couldn't face the prospect of terminating, having gone through a pregnancy with a far bigger challenge, in my mind. It was a scary time, luckily I'd had experience with downs children and knew what I was getting into.
You are a very strong person. I know you don't always feel like it. But you really are.
Sal. X

Tattie Weasle said...

Very bored in Catlunya - The m/c rate if you are already prone to them for no apparent reason can be high. But there are plenty of tests for Down's that are NOT invasive such as the nucal fold test which must be done earlier on in pregnancy 10 - 14 weeks. I was too late for mine at 17 weeks. For us geriatric motyhers ( just LOVE there term I found this a good website...www.mothers35plus.co.uk
Expat Mum - it is a case of too little information and a lot of pressure. I was very angry with the doctors over this luckily my husband, apart from telling me not to be rude, was supportive. But what of those poor Mummies without that support and frankly without the knowledge to question these berks, sorry doctors...so pleazsed you went with your gut feel. I always say without these tests we would have to get on with it anyway and perhaps that is a good thing!
legend in his own lunchtime - your wife is never a failure and she should not think it. Being a Mum is nore than just getting pregnant and having a baby!
The MadHouse - in the end I felt the same. The process that got us there was hard.

Tattie Weasle said...

Resewn sally - thank you and no I don't think I am particularly strong. If I had not had the support of my husband nor the relief to know that we could afford help I know the decision would have gone the other way. I would not have been happy and would have found it very difficult to ever attempt to get pregnant afterwards but I know that I could not have gone on with it and burden my husband with a child with down's AND a wife with depression without the financial clout we had behind us. I am not saying we had a massive amount there would have been sacrifices but none too drastic. Hand on heart it is easier for those who are wealthy in many respects.

Potty Mummy said...

Great post. x

Ladybird World Mother said...

Oh, Tattie. This was such a wonderful post, so honest and so full of the pain you must have felt. I am SO glad I read this today. I have never been in your position, but have had the offer of tests for such things, and have (possibly stupidly) refused them all. I felt that whatever we got, we would deal with as it was our own darling baby. However imperfect. BUT how hard it must be to be in your position and for this to be a real possibility.
I think our general view that a baby that is going to be 'challenging' shouldn't be allowed to continue is so wrong. SO wrong. And look at the comments you got on this, so many similar stories. Awful.
EXCELLENT post! xx

Kathy said...

My story is much like yours. I was also 39 and refused an amnio bc of the chance of a miscarriage. I lived with the fear of Down syndrome my entire pregnancy. My daughter did turn out to have Down syndrome and she is, along with her sister, the light of our lives. It sounds so Pollyanna-ish but we feel totally lucky to have her. Down syndrome is nothing to be so afraid of for all the reasons you stated and many more. I wish I could go back and comfort myself and all the other pregnant women who are so afraid - everything will be fine, fabulous even!

Tattie Weasle said...

Potty - thank you.
Ladybird World Mother - I personally think it wrong that we should screen this way but there are so many factors to take into account. What I think MOST upset me was the attitude at teh hospital. It seemed to me as if they were actively pushing me toward termination. I understand from a national perspective having a child with down's or indeed any mental or physical disability is drain on the collective purse strings. But maybe that's just Eugenics....
Kath - everyone I meet who has a special baby ALWAYS says how lucky they feel and it is not trying to make things better, it is a genuine belief. I don't know how I would have coped but I do know that just as Bog Boy is loved as he is he would have been loved equally if he did have Down's.

Crystal Jigsaw said...

Your blessings indeed. A very poignant post and one I imagine was quite difficult to write.

I don't know what I would have done. Panicked, pestered every one I knew, travelled the length and breadth of the country to find answers, perhaps.

CJ xx

Craig Kendall, Down Syndrome Book Author said...

What a wonderful post. I understand the anxiety and fear associated with a child with a disability. When my first child was born, I remember immediately counting his toes and fingers to ensure they were all there! To this day I still remember this vividly. Your post brought tears to my eyes. I have posted several articles that new moms may find helpful on DownSyndromeHope.com especially the article,
Preparing for Your Down Syndrome Baby
.
Thanks again for your wonderful site.

Tara said...

What a great post! I was given 1:20 odds for Down syndrome when I was 38. We declined the amnio and now have a perfect, healthy 2yo son, who has Down syndrome. I am so glad we declined the amnio. Getting the diagnosis when we had a beautiful baby to hold was easier, I think, than if I just had a pregnant belly. A month ago, at 40, I gave birth to a typically chromosomed little girl. We chose to skip all prenatal screenings except u/s with her. Didn't matter a bit to us if she came sporting an extra chromosome! :) Btw, big brother adores her. They're going to be great friends.

Spencer Park said...

A great post Tattie. My ex wife had an amnio with our first child. I, possibly like your husband, never really knew what was happening. My ex, possibly like you, knew too much!

Even though I was being led by the medical staff, and was very good at convincing myself that it made the result would make no difference to me, I was scared witless.

Mystica said...

This is such a good post. I had three children - conceiving with no issues - those of us like this take it for granted. Thanks for showing the other side of the coin.

Tattie Weasle said...

CJ - I found knowledge very important. I HAD to know both the positives and the negatives. I think the most difficult thing I had to get my head round was the fact that the child I carried might not be perfect that there might be something wrong and when you are pregnant it is difficult to get one's head round that.
There was one thing that did come out GOd had given us this child and we were blessed whatever the outcome.
Craig - thank you. I tried checking out your site but could not connect. If you do read this could you take a look just to make sure?
Tara - I think you are right getting as diagnosis while holding your beautiful baby is easier and I am so happy he now has a lovely baby sister to play with.
Spencer - I think Charlie was dead scared but it made me so angry that he seemed to be siding against me!
Mystica - you are kind. As I said apart from those few weeks of fear we were not tested as such. Though not for a million years would I wish any mother to be to go through them.

Iota said...

I couldn't bear the fact that the risks of the amnio were as high, or higher, than the risks of the conditions it was trying to spot. It's just medicine gone mad. So we decided from day one that we weren't going to have any of the diagnostic tests, beyond the routine scans. We wouldn't have terminated, so what was the point?

A friend of mine was told by a consultant that having a Downs baby would use up valuable NHS resources - for the lifetime of that child. I can't believe people say things like that.

Go on you know you want to...

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