Friday, 21 March 2014

Screening in Pregnancy and World Down's Syndrome Day

I'm a little late to this debate but I've been wanting to write about my personal experience for ages. It's been a little to close for comfort in the past but I feel that now is a good time.

Last year the controversial '98.6% accurate' blood screening test, developed by Professor Nicholaides of Kings College Hospital, was announced. It was uncomfortable timing as at the start of last year we found ourselves directly affected by the screening process.

I should fill you in a little on my background first. I am a super proud mum of a 4 year old boy, but he hasn't been my only pregnancy. My first ended with a termination for medical reasons when anencephaly was detected at the 12 week scan at Kings. (I wrote about it in this post) Anencephaly is a neural tube defect which meant that our baby was developing without a forebrain. The decision to end this pregnancy was heart-breaking but without a brain, there was no chance that our baby would live outside of the womb.

I had our son in 2010 and then last year, after what seemed like an age of trying I fell pregnant again. Obviously we knew that things don't always go as planned but I can honestly say that we were not nervous about the 12 week scan at Kings at all. We agreed to the Downs testing, as we had before with barely a thought about it. It just seemed like one of those routine questions they ask, almost off-hand, part of the procedure.

The scan was beginning to take a while, but still we weren't concerned. 'The baby is just in the wrong position' we were told. Finally the doctor turned to us and I suddenly felt the sense of doom. We were told our baby had a 1 in 2 chance of having Downs Syndrome, and there was a problem with the development of the heart. Our world came crashing down - again.

We were offered a CVS test immediately to confirm Downs Syndrome and my head was in such a spin I agreed. I wish now we had been given some time to digest the information we had just received, time to work out how we felt and what we wanted our next step to be. But at the time we were rushed into more tests that we would spend the next few weeks troubled by.

We were hoping to come back from the hospital with good news and a fuzzy black and white scan photo but instead we had heads full of questions we never thought we'd have to ask ourselves. We had days and days of conversations we (naively) thought we'd never have to have - if the baby does have Down Syndrome would we be able to cope? What sort of life would it be able to have? How severe would any other health problems be? And lots of 'would it be fair' questions - fair on our son? fair on the baby? fair on us as a couple? even would it be fair on society? Some of these questions seem ridiculous but they were all things we discussed, unwillingly. And at the crux of it all - if the baby was found to have DS what would we do???

During this awful week I turned to the Internet (as you do!) and tried to find out as much as I possibly could about being the parent of a child with DS. I spoke to some truly wonderful mums, who talked openly with me, and of course, I found great information on 'Downs Side Up'. I felt that at the hospital we had not had time to get a fully rounded view of what our 1:2 chance might mean. I desperately wanted a more balanced view so that we could make a better, more informed decision; a decision we already knew from experience that would live with us for the rest of our lives.

Perhaps in light of our previous experience, we decided that we would not be able to terminate this pregnancy if DS was detected. Our first baby had no chance of life, but this baby could live a full and rewarding life. Yes, there would be unique challenges, really tough times and some things would be a terrible struggle, but couldn't the same be said for bringing up any child? I started to question the whole nature of the screening process - if you can medically terminate for DS, then what about other learning difficulties? Would there soon be tests to screen for Autism, or Dyslexia? And what about physical disabilities? Hadn't we as a nation, just cheered, celebrated and thoroughly enjoyed the wonderful achievements of the athletes during the 2012 Paralympics? Are we now saying that their lives are somehow 'less' than an able-bodied person? I was also shocked to realise we were making assumptions about the life of our fetus that was only 12 weeks old and the size of a plum. How on earth can anyone know what the potential for any child is?

I received the results of our CVS test on the phone a week later (had it really only been a week since this all began?) The test was negative for Downs Syndrome...however, they were still testing for Edward's and Patau's Syndrome. Once again I didn't know how to feel and I was caught in a waiting game that I didn't know if I even wanted to be in. While this was going on we went for more detailed heart scans. Unfortunately, the heart was not developing as it should be, and even at this early stage it was clear that the chambers were very deformed. By 16 weeks the prognosis was not good and on this basis alone we made the dreadful decision to end this pregnancy.

Two days after I received the further results of the CVS test - negative for both Edward's and Patau's Syndrome. Just when I thought I couldn't be any more mixed up! Obviously, I still had lots of hormones racing through my body, I was dealing with grief, recovering from the operation and now this. The negative result really didn't mean anything to us by this stage, and my extensive googling meant that I was also aware that the Screening process only tests for the main disorders. In reality a 'negative' is not always the definitive all clear we are lead to believe it is.

As you can imagine, an experience like this changes the way you think about things. I am lucky enough to be pregnant again and at 17 weeks I feel happy with the way things are progressing. I have had wonderful care at Lewisham Hospital and the consultants and midwives have totally respected our decision to refuse any screening tests.

I am not saying that this is the right thing to do for everyone - I totally believe in everyone having the right to decide for themselves and to make an informed decision, but I think in order to do that we must be able to have access to unbiased information at every stage. There is also no need to hurry in making these decisions, nothing has to be done right away. Parents must be given time to digest the information and work out what's best for them. And finally, they should be given full support with whatever choice they make.

I hope that by sharing my story I am adding to the many voices that are questioning this medical 'progress', questioning whether we can have too much information. Society is made richer by all the people in it, not by striving for some kind of 'perfection'.

Today is Downs Syndrome Day and to draw attention to this event people will be wearing colourful socks worldwide. Wear your funkiest socks, share a 'selfie' with #lotsofsocks and donate just £1 via text message. Text: SOCK77 £1 to 70070

For more information on how to get involved, read Help Us Raise Money this WDSD14.

'for we are all colourful and unique'

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