According to the National Down Syndrome Cytogenetic Register (NDSCR) there were around 775 babies born with down syndrome in the UK in 2012. Since 1989 the number of diagnosis has increased from 1,066 (with 30% of diagnosis made prenatally) to 1,982 in 2012 (with 64% of diagnosis made prenatally). As science and medicine advance, so do tests for the early detection of Downs Syndrome (DS) and the number of reported abortions after a positive diagnosis.
I was just past my 19th birthday when I found out the baby growing inside me may have Downs Syndrome.
After a dating scan and 2 unsuccessful attempts of an amniocentesis I was left to continue the rest of my pregnancy with a statistic of a 1:140 chance of having a baby born with DS, which is considered high risk. My mind tossed the numbers around, sometimes making it an inevitable 1:1 and other times a 1:1000000. At some unknown point, I guess I settled down to living within the unknown, not daring to move from it’s safe balanced center point. If I moved from that place of safety, I might convince myself that it wasn’t going to happen, which in turn might lead to denial and disappointment or I might face that it was going to happen and swing helplessly in the not knowing of ‘how bad’ the symptoms might be. That is the nature of DS. So for the second half of my pregnancy I clung to the paradoxical safety and balance I found in the unknown.
22 years later I’m writing this blog, watching my daughter drink her wine too quickly as she sings (terribly) on her wii sing star game whilst her friend watches. She does have Down’s Syndrome and the research I’m doing as I hold her in my awareness tears me in two as I struggle to work out how I feel about the current ethical debate, brought about by the medical advances in the early detection of DS.
When I listen to the debate and the pros and cons for early testing and the statistics suggesting that more women will abort because of this, my heart hurts at the possibility of people missing out on the gift of bringing up a child with DS
I’m a feminist, I celebrate women, and work to empower them where I can. I am clear that it’s right that women should have the choice to go ahead with a pregnancy or not.
But is early detection of Downs syndrome a bittersweet pill?
In 1993 when I was pregnant I was offered an AFP test at around 16wks. Days later a midwife called at my home to discuss the results and sent me for a dating scan (to check my dates were correct and weren’t affecting the results). A scan confirmed my dates were right and I was booked in for an amniocentesis. I had two of them which increased the risk of miscarriage but both were inconclusive, as the amniotic fluid could not be drawn into the syringe. By this stage in my pregnancy I felt so bonded to my baby I couldn’t think of termination. I had told family and friends, I had delighted in the first fluttering’s of movement inside me, I had brought things and so even when the thought of bringing a person into the world with DS terrified me, I felt I had to go with it.
What would have happened had that test been offered to me at 8wks, which is now possible with ‘Verinata’?
Well the answer is…..I don’t know. Would I have terminated the pregnancy? Maybe. It certainly would have been a damn sight easier. At 8 weeks I wasn’t showing. At 8 weeks I had only told my husband. At 8 weeks I hadn’t felt the life inside me move.
Would early detection have changed the course of my life and would that have been such a bad thing?
When Ashleigh was born and it was clear to me she had DS, I resolved to love her the same as her older sister. I committed to treating them the same and by that I meant that I would try my best to not discriminate and hold her back due to my preconceived ideas of DS. At the time, naiveté and perhaps the innocence of my youth, kept me blinded. I didn’t know that we would be trail blazers, being the first DS child in schools and colleges. I didn’t know to what extent I would have to advocate for her, I didn’t have a living experience that the world was made for ‘normal’ people and simple things that were so easy for others to obtain, would be so hard for Ashleigh. For example, my older daughter had the freedom to choose her college and university but Ashleigh was told that the council had ‘good enough’ provision for her and so choice did not come into it (unless I could ‘prove’ the provision provided was not ‘adequate’ of course.)
I reflect how birthing her has propelled me into activism and protecting the rights of a minority group. I didn’t know that we would be helping the world to become a better place because I had made the choice to have her in it, or that we were helping people to accept diversity in a world that is terrified of difference and has an unhealthy obsession for perfection. I didn’t know that my choice to birth her was going to help balance the madness of measuring success with how wealthy or powerful someone is. I certainly did not expect to become marginalised – placed in a box as a taker of tax payers money and treated like a scrounger that should be stopped and shamed (as the current government and media propagander campaign states)
Neither did I expect my heart would be cracked open so wide with the pain of seeing her under valued, unappreciated, disrespected, over looked, spoken over, seen through, misunderstood, teased, bullied and disenfranchised. Let it be said clearly that she has not broken my heart, but the people who can not see or feel the pure joy, innocence, cleverness, tenacity, honor, kindness and compassion with which she holds herself with. It is for them, that my heartbreaks and the harsh world I see when she holds her mirror up. Sometimes the reflection I see in her mirror makes me want to run as fast as I can from this Earth, or rather the people on it. Sometimes I want to run from myself and sometimes I want to wrap her up in the densest cotton wool so that she doesn’t hurt or maybe it’s so that I don’t hurt.
I can understand why women would make the choice to not bring a being with DS into the world right now. It’s a decision that asks a lot of you, it calls you to perhaps change your whole perspective on life and the one you thought you were going to live. I have to admit I haven’t found it easy, but just because something isn’t easy doesn’t mean it isn’t worth it or there isn’t the potential to experience the highest of joys too. There have been times I have regretted my decision and on the occasions (strangely, of which there are many) when people have flippantly said “aw but you wouldn’t change her would you? I sigh inside and say silently ‘ya know sometimes I would’ because I wonder whether this world is ready for such a teacher? What would be more accurate for me to say is “No I wouldn’t change her but i would would love to change the world for her.”
As we know, the pharmaceutical industry is driven by profits. Corporations get rich on the presence of illness and the pills developed to combat it. Screening tests for early detection of various diseases and illnesses are being developed all the time.
Perhaps in the case of cancer, dementia, HIV and other devastating illnesses, early detection can indeed save lives, but what is the driving force for early detection of DS other than to prevent the life from ever becoming?
Dr Ray Kruse Iles – CEO and a founding director of MAP Diagnostics Ltd; a medical diagnostics company developing new, rapid, robust and affordable diagnostic tests in women’s health and fetal wellbeing stated, the development of the test was “the result of a life times work” and describes downs syndrome as a “serious disability” of which the seriousness has been the driving force of his research.
Statistics suggest though, that there is an inconsistency between the lived experiences of people with DS (and their families) and the corporate arms race to test for it. Most people I have come into contact with feel blessed to have a person with DS in their lives. They feel enriched by their presence. More and more I am seeing parents, siblings, grandparents and friends writing about their positive experiences.
Mother of two ELIANA TARDIO writes
“So now, more than six years later, there are many reasons why I feel blessed to be raising my two kids with Down syndrome”.
Author Martha Beck (mother of Adam who has DS) tells Empower Her
“I now think that his birth saved my life in many ways and I was told at the time that I was throwing my life away which turned out to be true. It’s just that the life I was throwing away didn’t really work for me and the life I got back is truly, truly blessed.
So if you have had a loss or a diagnosis that is terrifying to you right now, just question your biases and give it time.
Sometimes the things that we think are going to destroy us are actually just opening a door so that we can experience genuine happiness”.
Assistant professor of health care ethics Chris Kaposy – Impact Ethics
“The arms race to develop these tests is not being driven by the needs of people with DS or the needs of their families. Of course, a great deal of scientific ingenuity is needed to create novel tests, like the one Dr. Iles and his colleagues have recently described. For this reason, creating these tests might require a lifetime’s work. But the social utility of these tests is incommensurate with the effort needed to create them. In contrast to the scientist who devotes her life to the treatment of cancer, Dr. Iles’s devotion to create a test that helps parents to avoid the birth of people who tend to enjoy their lives seems somehow less ambitious or off the mark”.
To end, I want to say that I respect all women and their choices and I am pleased to be in a country that sees the importance of women having the freedom to choose. Each woman’s decision is her own to make.
My wish is that parents are well informed; my hope is that tests are not pushed onto women through the desire of the pharmaceuticals to make money. My fear is that we see DS as a burden instead of looking inward and then outward at the world we have created and ask ourselves why there is not an easy place for difference here on Earth right now? Or maybe we could ask ourselves why DS or any other disability is seen as so bad that we must eradicate it. And if, and when we have, I wonder what will be next in our striving for perfection?
Before you go
Watch this amazingly powerful youtube video of Karen Gaffney speaking out about “All Lives Matter”