Catholic Medical Quarterly Volume 64(4) November 2014

A light shining in the darkness:
The gift of people with Down’s syndrome and the medical mis-selling of Down’s syndrome

Adrian Treloar, FRCP, MRCGP, MRCPsych

Children with Down's syndromeStanding on a hot street corner waiting for a bus in Malta this summer, I saw two young girls with Down’s syndrome happily playing, laughing and chatting as they waited for a bus to take them to their Auntie. The beauty of seeing two young women who contributed to that long hot wait, in a country which has protected the disabled and vulnerable so much, was truly uplifting.

The whole world was shocked by the Australian parents who rejected their surrogate child because he had Down’s syndrome taking only the healthy twin back to Australia[1]. Notwithstanding the subsequent claims that they had not known of the twin, had not insisted on a termination, and that the father was not a convicted sex offender, and notwithstanding the moral wrongs of surrogacy, multiple embryo creation and ownership of children, we want to just focus upon the shocking rejection of disabled children.

I remember showing my children Belgian people with Down’s syndrome happily pushing disabled people back to their hotel, after the Blessed Sacrament Procession in Lourdes. Trying to explain to them that the UK government spends hundreds of millions of pounds a year screening women so that we can terminate 1100 children per year (92% of all children with Down’s in the UK) was not believable to children who saw such joyful and good people happily pushing the wheelchairs. Indeed, they could not believe that the NHS would fund and encourage the destruction of such people.

We are especially concerned that the medical profession does not know how to advise parents with Down’s babies. Writing in the Daily Telegraph, Tom Bachofner shared his heart break about the Australian couple who refused to take the surrogate twin with Down's Syndrome , and the story of his two-year-old little girl, Rosie, with Down's. “She's the most wonderful, normal, happy little person you're ever likely to meet. The thought of abandoning her just doesn't bear thinking about” he said.

But he also expressed his grave concern about the way he and his wife were counselled once the diagnosis of Down’s had been made.

“What disturbed me was how the conversation with the consultant and nurse was angled towards termination. There wasn’t a single word about what the future might hold for a child with Down’s. I asked if they had any literature for us to take away and digest. They muttered nervously, before handing over a ripped piece of notepaper with a website address scribbled on. No leaflets, nothing.” [2]

“What disturbed me was how the conversation with the consultant and nurse was angled towards termination”

We have spoken to many mothers of disabled children who have felt pressurised to abort their children and who have been made to feel awkward by medical and nursing staff  when they refuse testing or termination. One had “Refused amniocentesis” in bright red on the front of her notes for all to see. Another felt that she had to justify her decision not to abort every time there was an antenatal clinic. Another just could not bear to attend the antenatal clinic as she felt so intimidated by it.

The outcome of a positive nuchal scan or amniocentesis is, in 90% of cases, the killing of that child. We are told that women choose that, but we know that they make choices based upon the information, fears and prejudices that they are fed. The medical profession does not appear to know how to present a diagnosis of Down’s. At a moment of crisis, many women who would have dearly loved and cherished their disabled children lose the chance of ever finding out the truth. Richard Dawkins now states that not aborting child with Down’s is immoral [3]. Should all Down’s children be robbed of the chance to love their parents.

“Rosie was an easy baby. She’s now two and a very normal little person. We wouldn’t change a thing about her. After all, Down’s doesn't define who she is - it's just one part of her.” Tom Bachofner [2]

For many of us, Down’s syndrome has brought untold joys and gifts. Those two women playing and laughing at the bus stop in Malta brought joy to all around.

My brother brought great joy and happiness (as well as hard work) to me, my family and many more besides. The Church was packed at his funeral. Many wept at his passing. He had left no heart untouched. And just for the avoidance of doubt he had been especially severely disabled and challenging for my parents to care for. He was not one of the “easier ones”.

In Table 1 I suggest  some brief comparisons of characteristics of “normal” children and children with Down’s syndrome. The point is that many of the things that we would dread in our children are less likely in people with Down’s syndrome than those who do not have it.

"Normal" Down's People
Allowed to be born (not aborted) 80% 10%
Noted to be happy and sociable Less More
Smiley Less More
Likely to be imprisoned More Less
Likely to abuse drugs More Less
Will do better with good medical care and support + +++
Parents likely to be especially glad they have them + +++

The world should be outraged by the medical mis-selling of Down’s syndrome.

We need to do more to get this message of joy and hope across. The world should be outraged by the medical mis-selling of Down’s syndrome. Down’s syndrome should not be mis-sold by medics at a moment of crisis in a family’s life. Who can blame women for aborting when an entire industry, pushed along by poor quality medical counselling and information is focussed upon and funded for the destruction of their babies. Some of the great joys that our world should celebrate, are being destroyed by medical misinformation and prejudice.

Adrian Treloar, FRCP, MRCGP, MRCPsych is a Consultant Old Age Psychiatrist

Declaration of interest

The author’s brother had Down’s syndrome and gave more than could ever be imagined.