Mother says: 'Down's Syndrome is all about love'

Tommy, inset with his mother Jane, plays murder suspect Terry Boyle in a BBC drama

When my wife and I were talking about having a second child - this is more than 20 years ago - I did not show any enthusiasm because I was afraid. I was much older than my wife, but we would both be in the older group of new parents, and I was afraid that there would be a high chance of our having a baby with Down's Syndrome. Having an abortion if this did occur was out of the question. So we did not have a second child. 

I have come to regret how I let my fear rule our life in this way. I regret not being more positive about how God gives each person - whatever their personality, characteristics, or interests - a meaning in the providential plan for us all. I have come to regret, too, being so very ignorant of how people affected by Down's Syndrome can be a boon to a family and to society.

Earlier this month, this blog looked at how Richard Dawkins was chastised by parents of children with Down's because he could see only sorrow in the lives of such people and their families. See this post here. The parents pointed out that, to the contrary, despite health problems being typical in the early years, people with Down's were innately happy and they brought a lot of joy to their families. 

So, to continue to educate myself on this matter, I want to lay out more information on the life of a person with Down's Syndrome and what impact it has on their family.

Jane Jessop had been a marketing executive in England, and when a doctor told her that her newborn son had Down's Syndrome, the genetic condition caused by the presence of an extra chromosome in the pers, “My first reaction was to wonder why God had sent this baby to us....What was God’s purpose, what did he want me to do? But maybe it was more about God’s plan for Tommy.” The syndicated Telegraph article continues:

In her tired, postnatal state, she could not then have predicted that her son would go on to star in a prime-time BBC series, one of the first actors with Down’s to do so.

Down’s affects about 40,000 people in the UK and life expectancy has increased dramatically since the 1950s; somebody with Down’s can now expect to live to their late fifties, at least, with some living well into their seventies. 

Jessop highlights what is referred to as "the joy and warmth Tommy has brought into her world" - “He’s enriched us enormously. I’m delighted with the young man he’s turned out to be.”  The article explains:

Most people with Down’s experience some form of intellectual impairment; for many, language is delayed and memory impaired.

“Tommy’s prognosis was very poor. But I would say to parents, don’t believe all those pessimistic forecasts. When Tommy turned one, he kind of woke up. It was as though the sun came out; he became smiley and started learning. He reacted to everything, whereas he hadn’t in his first year. When we came into the room, he would bounce up and down. He attracted love.”

Tommy’s communication skills thrived with the help of music; he loved being sung to and playing with little bells on sticks. He once said that when he dances, he “becomes the music. It’s as if he disappears into himself,” says Jessop.

Tommy [who is now 36] was part of the first cohort of children with Down’s to attend a mixture of mainstream and specialist schooling (before the 1981 Education Act, disabled children in England were mostly segregated from their peers).

It enriched his childhood, as well as those of his classmates, who learnt to appreciate difference. Aged 10, he became a strong reader virtually overnight; he was fascinated with online quizzes and began to memorise Trivial Pursuit answers so he could beat his family.

“It was a bit cheeky – and good practice for learning lines now.”

Jessop admits to being a little sceptical when a teenage Tommy said he wanted to be an actor. “We didn’t really believe him. We were thinking: ‘Well, Tommy likes books, why doesn’t he work in the library?’ ”

She created a theatre group for those with learning disabilities, and it was successful in highlighting the skills of its members in the demanding entertainment industry. Tommy was then included in a BBC talent group.

[At present,] Jessop is frightened by the prospect that Tommy’s condition might at some point be eliminated from the population.

All pregnant women in the UK are now offered a free prenatal blood test screening for Down’s, first approved by the UK’s National Screening Council in 2016 (it replaced a more invasive test which carried of a risk of miscarriage).

Nine out of 10 in the UK terminate their pregnancy after receiving a positive diagnosis, according to a 2013 government report. The condition has almost disappeared in some countries, like Iceland, where termination rates approach 100 per cent. [See my Dawkins post here for details on Iceland's aggressive screening regime.]

Jessop says: “I’m really thankful I was never offered a test, because that is a horrible decision for parents to take. It’s ironic: now [people with Down’s] finally have the chance to learn and show us who they really are, and society and scientists are trying to deprive them of the chance to live. I’m not talking about abortion itself, I’m just talking about the choice of doing it because a child will have Down’s.

"I think having a child with Down’s syndrome is all about love. Some of my best times are when it’s just me and Tommy on location – he’s really good company. Think about your family, friends and colleagues – how boring would it be if everyone was the same.

“And the tragedy is that many adults with Down’s syndrome are aware of this. Tommy himself feels very scared by it.”

Her views are shared by actress Sally Phillips, whose son Olly was born with Down’s in 2004. Phillips told the Telegraph in 2016 that raising her son has been much more fun than she anticipated after seeing the grim face of the doctor who gave her Olly’s diagnosis.

“I think I would have been really served by having someone around standing up and saying: ‘This is a good thing’,” Phillips said. 

Tragic case

A tragic case of misdiagnosis arising from a prenatal test has come to light this week where an Irish couple sued doctors because they had an abortion when told their baby had Edwards’ Syndrome, a condition that is usually fatal around the time of birth. In fact, the baby was healthy and the tests had shown false results. The story - see here - concludes in this way:

Lawyers for Rebecca Price said the realisation that she had aborted a “normal, healthy baby” caused intense, nervous shock and left her with a devastating sense of loss.

Prenatal testing conducted in a perfunctory manner, and the acceptance of abortion as a catch-all remedy, are a combination that can be expected to cause ongoing torment as the death toll mounts because of mistakes.

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