Did you know your son had Down's sydrome before he was born?

“So, did you know your son had Down’s syndrome before he was born?”

A few years ago, when our son was young and cute (he’s still cute but rapidly approaching those teenage years) and we met new friends and acquaintances, we would often be asked this question as conversation naturally moved towards children. I must admit its been a while since I was last asked and had forgotten the impact it can have on me as it forces me to remember things I’d rather not.

But recently a very old friend of mine from school days, whom I had lost touch with for many years, tracked me down through Facebook. Of course it was a delight to be back in touch with someone I thought had left my life for good 30 years ago.  We conversed by email and caught up on each other’s progress over the years. He too has a son and daughter similar ages to mine and so we swapped news on our children and I informed my friend of my son’s condition. Then followed the old question.

We had the usual scans during the pregnancy and were given a risk rating for such an event (around 1 in 650 I think our risk was) but nothing to alert us to anything other than a perfectly normal pregnancy and baby. But of course a risk is still a risk and the odds have to come up for someone (otherwise what’s the point in playing the lottery).

Our son was born by emergency caesarean section after his heart rate started dropping during labour.  The whole thing was a bit a blur and, as this was our first born, we had no benchmark for these things.  But to me, at the time, everything seemed OK.  I can see now, with the benefit of hindsight that things were not ok.  When my son was delivered he was floppy – I mean really floppy – and his cry was more of a croak than a hearty bellow. But what did I know.

Two midwives took him to a weighing machine in the corner of the room and spent several minutes looking him over. I realise now they were checking for the signs of Downs’s syndrome – single crease in the palm, speckles in the iris, etc. I think there is (or was) a list of 10 things and if they see 5 then alarm bells ring.  But they had their backs to me and I just thought they were cleaning him up.We spent a happy first night in a side-ward on our own. Was this unusual or just (as I thought) because my wife had had a c-section? My wife tried to breast-feed but this proved troublesome. She persevered however.

Next day we were moved back on to the main ward along with the other mums and new babies.  It was a happy time for us.

But the next morning a nurse appeared and asked me if I would around at mid-day that day. We asked why. “Oh, the consultant needs to have a word with you both. Nothing to worry about.”  Oh dear. We weren’t going to let that pass and we got the nurse back to enquire why I needed to be present if there was nothing to worry about. “We think there might be a problem with your son’s eyes.”

They may as well of told us he had two heads. My wife was distraught and we were quickly moved to another side-ward with our new son.  More so we didn’t upset the other mums I think than for our benefit, but perhaps I’m being unfair in saying that.

Before long the senior registrar appeared with another doctor. The consultant still had not arrived. Clearly they could no longer delay telling us whatever it was they needed to tell us. The Doctor started off by asking us if we had any history of learning disability in the family. Odd but in that instant I knew that out son had Down’s Syndrome. I also knew that the doctor could not have asked us a more stupid question had she tried.In that single moment she had implanted in my wife’s brain the thought that she had somehow caused our son to have a learning disability by passing something on to him. But Down’s syndrome is a genetic condition and random in occurrence. The risk is higher the older the mother is but that doesn’t exclude younger couples as we can testify. I was 33 and my wife 30 at the time. If only the consultant had been there perhaps he would have made a less ham-fisted attempt at breaking the news.

We were soon left to ourselves. My wife was inconsolable and I was pretty upset as well. I was upset for my wife and desperately tried to put her mind at rest that it was nothing she had done, it was no-ones fault, that these things happen, and that we would be alright. I was so angry at the manner in which we had been told…and I am still angry now when I remember that day. I hope thing have improved…

Anyway we didn’t have long before our focus shifted away from us and our grief over the loss of our normal healthy baby. It quickly became apparent that something wasn’t right with our son. He was becoming very jaundiced and was placed under a lamp. Within a few hours we were moved down to the Special Care Baby Unit. Tubes were stuck into his small body and he was placed in an incubator. He looked so small and fragile and he needed a platelet transplant. We were worried we might lose him.

Three weeks we spent in SCBU. The nurses were fantastic. We bonded with our son and just wanted to get him home. It didn’t matter that he had Downs’s syndrome. There’s nothing like a spell in SCBU to get your priorities focused!

So, no, we had no idea he had Down’s syndrome until after he was born.

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