Dear Mum-to-be, Let's Talk About Down's Syndrome

There is a lot of media discussion currently surrounding the new antenatal NIPT test. All we ask for is truly unbiased advice to allow parents to make informed decisions about the test and the results. One journalist asked me what advice I would give a pregnant Mum about screening and Down's syndrome. I pondered for a couple of days, then wrote this letter.


Dear Mum-to-be, Let's Talk about Down's Syndrome






Dear Mum-to-be, let's talk about Down's syndrome 

I once stood in your shoes.

Pregnant with a much-wanted baby, and wanting the very best for him or her.  
"We don't mind what sex we're having, as long as they are healthy," we all say, without too much thought about the foundations that phrase is built on. 
You take your supplements and you stay away from alcohol and cigarette smoke. You rest as much as you can. You mull over every detail of the birth plan. And in your mind's eye your newborn baby is sketched; beautiful and bouncing and perfect in every way. They complete your family unit, they bring everyone together. You know you will laugh and cry, worry and burst with pride. You know you will be exhausted, but that they will make you a better person, and it will all be worth it.

But there is one phrase that makes you uneasy, a phrase that was mentioned when you booked in with your midwife, that is written in every pregnancy book that adorns your shelves, and it's currently splashed across every media outlet in the land - Down's syndrome
You don't know much about Down's syndrome. You may never have met anyone with the condition. But you think you know enough, just as I did. It won't happen to your baby of course, but you'd like 'peace of mind anyway'. And now there's a new test...

Your stomach is churning. Should you take this test? That need to know is growing ever larger along with your bump, until it is all that occupies your mind. You've heard some women refuse it, but it is standard, isn't it? This is causing you more stress than you need right now.
You think over the conversations you've had with your medical team. Down's syndrome is referred to as a 'risk', children like that 'suffer'. They have so many 'co-morbidities'. Why would so many millions of pounds be spent each year developing such a 'safe' test that gives 'better, earlier results' if it wasn't something to be detected and screened out at all costs? The medics wouldn't be 'hailing' it as a 'very exciting turning point in ante-natal screening' if individuals with the extra chromosome contributed greatly to our society. Or would they?

Well I thought that too, once upon a time before I smashed through the veil of mystery that surrounds Trisomy 21. Our daughter slipped through the net of screening and now I am privileged to live the reality of what her condition means. Stop for a moment and ask yourself what it is that makes you so afraid. Ask yourself if the life of a baby with Down's syndrome, a developmental delay that is accompanied by some level of learning disability, is worth any less than one without. 
Ask yourself what you would do if the test indicated a likelihood of Down's syndrome, for that peace of mind you crave is only obtained if you hear the result you think you need to hear. You would still need an invasive test to know for sure, NIPT is not diagnostic. And of course there is no cure for Down's, it isn't a disease or a preventable condition, no-one 'suffers' from it. The test only detects it.
The options after receiving a diagnosis in pregnancy are a) preparing yourself for your baby's arrival, or b) termination, and you should be given full support whatever you decide at every step. Just a leaflet will not be enough. And you will not be able to make a snap decision before filling 'an available slot for a termination the following morning'.
I don't know what I would have done had such a new test pinpointed that my baby had something I knew nothing about back then. If I trusted my medics implicitly and they talked of this symptom and that prediction for her future. People who medicalised that baby inside me, and knew nothing of the incredible individual she would be. If she has become the sum total of one hole in her heart and one additional chromosome. If it was automatically assumed that termination was the only option and my medical team painted a bleak picture of our future. If text books listed endless characteristics and bleak outdated predictions, would I have believed them? Would I have thought that termination was a kindness, a form of early euthanasia? How would I have been equipped to make such a decision with the limited knowledge I had? I'm glad I didn't know.

Of course our daughter is more like all the members of her family than any other child with Down's syndrome. We now know that it is only one part of what make her who she is. Her massive personality and life experiences do the rest. Natty is unique.

Only you can decide what is right for you and your family. Think carefully before you make a potentially life-changing decision. Go and meet a family, go and talk to a learning disability nurse who knows the realities of the challenges and joys that might lay ahead of you, contact a recognised charity such as the Down's Syndrome Association or Down's Syndrome Scotland for impartial advice. Be warned that some charities are funded by the test manufacturers. And be prepared for the dilemma you might face after the test has been taken, that other family members may meet you head on in your decisions. Be prepared for the stresses it may cause, the unending days that stretch out while you wait for the results of any invasive tests you will need in order to confirm a diagnosis.

I feel extraordinarily privileged to be the Mum of such an incredible little girl. She has taught us to slow down and appreciate the details in life, to live in the moment with honesty and enthusiasm. I would not change one single thing about her, or our journey. No, not even her extra chromosome. We truly are the lucky ones.

We have learnt we cannot plan for everything, and that perfection comes in many forms. We have learnt to appreciate the real priorities in life. We have learnt that one of our greatest gifts was something we initially feared and tried to avoid, and we often weep together at the thought that she might never have come into our lives. Oh, how dull they would be in comparison.
And why do we target Down's syndrome specifically as a society? Why is the language used to talk about Down's syndrome so loaded? Why are so many assumptions made? That I do not know, but make sure you are really being given all the choices and rights you deserve, and that includes the right to unbiased information, the right to choose whether to test or and the right to continue with your pregnancy after a diagnosis if you wish, without being continually asked if you have changed your mind. Those rights and choices are sometimes being removed or muffled.

I, for one, think the world will be a much less joyful place if we seek to eradicate Down's syndrome. We will lose an honesty, simplicity and beauty that we can ill afford to live without. 
I will not judge you, whatever path you take, but I know that there is no test for the bright, feisty, gorgeous young lady in our family. The one who annoys the hell out of her big sister but is always the first to warmly hug a sad friend. The one who rides horses, swims like a fish and knows the lyrics to every Mary Poppins song. The one who is always centre of attention at parties or school events. The one who lives life to the full. The one who climbs into bed every morning, stokes my face and says 'Mummy, you are beautiful." To which I reply, "So are you. Beautiful. And perfect in every way."




********

I am honoured that Dear Mum to Be
has been chosen as a Mumsnet Blog Awards Campaign Finalist. If you would like to cast your vote, click the icon below and complete the simple form. 




mumsnet

No comments:

Post a comment

Thank you for joining in the conversation at Downs Side Up