Some years ago, when we were decorating our Christmas tree, my children asked how we could remember the babies at Christmas - this question came up because baby No 1 had been due on Christmas Day 1985 and we had always talked about the babies who didn't make it.
To begin at one of several beginnings. I married Bob in 1984, he already had two children who were then 4 and 6. We were both in our 30s and decided not to hang about with having more children. I got pregnant quite quickly but then, at about 16 weeks, there was no heartbeat. There wasn't a miscarriage either so I had to have a termination for the dead baby. This was all very traumatic and inexplicable. But we carried on and our daughter, conceived that Christmas, was born the following September. It was a busy time including two stepchildren who spent much of their time with us and my job as a secondary school teacher in Hackney.
I got pregnant again. This time I got to about 13 weeks but had a miscarriage. It happens. Life for the rest of us carried on. I changed jobs to working in a primary school and on the day I got there I started to miscarry pregnancy No 4, I foolishly carried on working, it was all getting to be such a regular occurrence. However our GP referred us for "secondary infertility" and our ability to conceive was tested. In fact we managed to beat the system because we also found out I was, yet again, pregnant, albeit at a very early stage and too early for an amnio which was the only test available in those days.
Meanwhile Bob and I had the results of our tests and we were told that his chromosomes showed that he had a balanced translocation of No 13 and this explained our baby loss. Someone with a balanced translocation is genetically unaffected but at gamete stage of that person's conceived embryo there can be another translocation or completely normal chromosomes or a trisomy - three No 13 chromosomes where there should be only two. It was assumed this was what had caused our baby loss over the years and an amnio would tell us whether or not this baby was affected. I had never heard of Patau's Syndrome and had no idea what it was, other than being "like Down's syndrome only lethal". Our lovely curate managed to get hold of information for us, reluctantly provided by the hospital where he was a chaplain (predating easy internet access), and it was very shocking and very sad to see how babies were affected. I was 41 and time was running out so we elected for the amnio and it was at this time that I contacted ARC (in those days SATFA - Support Around Termination for Abnormality) and spoke to Jane's predecessor, the equally wonderful Joannie who calmed me down and was there throughout.
The amnio showed that this baby, my fifth, Bob's seventh, carried the same translocation. It was a shock but not as bad as it might have been because we knew Bob carried it and he seemed normal. We weren't given an option to terminate, the discussion never arose from anyone medical or otherwise. But we were advised to have the other children tested - this wouldn't happen these days because they were too young to give consent, but we decided to go ahead. My stepdaughter was clear, my stepson's test didn't work and my 3 year old daughter carried the translocation so it was a mixed bag of news. In September 1990 my youngest daughter was born, a footling breech necessitating a C-section but that seemed minimally challenging in view of everything else.
She is 30 this September and two of her siblings have gone on to have children themselves, it turns out that the one whose test didn't take all those years ago does carry the translocation but his two children are clear, his wife had one miscarriage but otherwise all was well. The two youngest haven't had children yet but clearly things will not be straightforward for them.
My continuing involvement with ARC is for many reasons. It is a wonderful charity and the only one providing support for people in our situation - trying to work out how we can continue with a pregnancy or not when we have been provided with challenging news that upsets the basis of our trust in ourselves and our lives. There is also, of course, the fact that three of my live children carry the translocation, my stepson has now completed his family but I feel so much for the two youngest who will have to face the same choices that I did all those years ago. Like any parent, I want to spare them any pain but in this case I probably can't.
As to Christmas? The question arose because all of the children have always known about the lost babies and about Patau's, they have grown up with the knowledge. It was my psychiatrist brother in law who said we should be honest and open with them from the start, it would be much harder to deal with if they found out later. This was contrary to the thinking these days when consent cannot be given for such young children to be tested, although of course they are tested in utero so those children would know. A conundrum. But they do know and they did know all those years ago and they decided that we needed to have a way of remembering the three we lost so we have three very beautiful baubles which always go at the top of the Christmas tree, under the star, and which I am always instructed to place there by these adult, wonderful children who I have been so lucky to have when it could so easily never have happened.
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