Caring for a Down’s Syndrome child – [UK] Telegraph

Sue Hare, 48, says of her son, Will:

Now that Will is nearly five years old, it’s impossible to look at him without thinking that he is the most perfect child imaginable. Having a child with Down’s syndrome is not a punishment; that one extra chromosome doesn’t make him a booby prize. People compliment me for having a very “Pollyanna” attitude, but I love Will in the same way that any mother loves her child.

Our Down’s syndrome son Oliver is a joy – The [UK] Sun

Former world auto racing champion Damon Hill says of his 20-year-old son, Oliver:

I think some people have an idea that their life will be over because they will be caring for this child. It is hard work, but so are all children.

‘Jane’, who aborted her child with Down syndrome, says:

… “It was heartbreaking having to accept I’ll never be a mum but I stand by our decision. I just don’t think it’s fair to bring a child into the world knowing it will suffer.”

Down’s Syndrome: ‘The idea of losing my son was too much to bear’  – [UK] Telegraph

Sandy Lewis, mother of 16-year-old Max, advises other parents of children with Down syndrome to enjoy each moment with their children. However, she says that raising a child with Down syndrome can be hard work when dealing with the physical ailments, getting services, coping financially, and fearing the idea of losing a child. Max, an actor, appeared with Cate Blanchett in the film “Notes on a Scandal.”

Mum of Down’s syndrome daughter ‘wouldn’t change a thing’ – Oxford [UK] Mail

Emily Robinson says of her two-year-old daughter Lucy:

“I believe if people really knew about Down’s syndrome, and knew the facts about what it was really like, they would not have the terminations.

“I wouldn’t change things for the world.

“If you look at Lucy, she’s walking, she’s starting to talk, and she goes to a mainstream pre-school. People’s stereotypes and preconceptions are 15 to 20 years out of date.”

([UK] Telegraph photo)

From the [UK] Daily Mail:

Leading obstetrician Robert Llewellyn says pregnant women in the UK should be given more counseling before opting to test for Down syndrome.

At present, he said the National Health Service has what amounts to an ‘opt out’ system, in which mothers are screened for Down’s at 12 weeks unless they specifically refuse it.

He fears the routine nature of this means many mothers do not realize the complex issues it raises and are not prepared if told their child could have Down’s.

This, in turn, could lead some to make an instinctive choice to abort the pregnancy if the baby does have the disorder.

Writing in the [UK] Guardian, Carol Boys says she supports a woman’s right to choose whether to have a child with a disability, but cherishes her own son with Down syndrome. An excerpt:

Some might say that because I didn’t have a choice when my son Alex was born 25 years ago, I don’t know what it’s like to have to think about termination as an option. Quite frankly, I’m glad that I didn’t have to think about it, because it made it so much easier for me just to accept my son for what he is – a fantastic human being.

…  let’s try to be a bit more positive about people with Down’s syndrome. After all, most of them can read and understand what is being written and said about them.

Carol Boys is chief executive of the UK’s Down Syndrome Association.

See also: Women ‘catapulted into the turmoil’ of Down syndrome screening — BBC audio. Boys says women should know more about the system for diagnosing the condition before they are tested.

Related post here.

Interviews with two women in the [UK] Daily Mail:

Political journalist Julia Langdon, 63, opted for an abortion after receiving a prenatal diagnosis of Down Syndrome 25 years ago. She says the decision left her “sorrowful,” but was “the right thing to do.” An excerpt:

For me, the decision – and it was mine and mine alone – was not about the rights and wrongs of abortion. It wasn’t about whether the child would have been loved, as she would have been.

… nor was it about whether I could cope, because somehow or other I would have managed.

It was only about not wishing to bring a disabled child into the world, a child whose life would be more difficult. I was given the choice. I made it. I do not regret it.

Shelley Thoupos, 29, and her husband received a prenatal diagnosis, considered abortion and decided against it. Their son Sam, 4, has Down syndrome. An excerpt:

We didn’t know then what we know now — that Down’s syndrome children can go on to lead happy, fulfilling, successful lives. They can live independently and, above all, be a treasured part of a family, not a burden.

… OK, I’ve had to adjust the aspirations I might have had for him, but what I hope for him now is every bit as valid. He’s as wonderful a son as any mother could wish for.

From the Irish Times:

A leading Irish obstetrician estimates that termination rates for Down syndrome in Dublin stand at between 50 and 70 percent, far less than the 92 percent rate reported for England and Wales in a recent study.

Fergal Malone, professor of obstetrics and gynecology at the Rotunda Hospital and Royal College of Surgeons, Dublin, said the difference could be traced to varying public attitudes. He said children with Down syndrome are more visible and accepted in Ireland than in the UK .

Related post here.

From the [UK] Times, [UK] Telegraph, Reuters, [UK] Daily Mail, [UK] Guardian:

A study in the current issue of the British Medical Journal says the number of reported Down syndrome pregnancies in England and Wales has increased more than 70 percent  over the past twenty years as women postpone childbearing.

But the number of births of infants with the condition has dropped by one percent over the same time period because more than 90 percent of such pregnancies diagnosed prenatally were terminated, researchers found.

Lead researcher Joan Morris, professor of medical statistics at Queen Mary, University of London, said more research was needed to find out why about 30 per cent of older women decide not to be tested. “It is important to ascertain whether the decision is an informed one and, if not, to address the lack of information,” she said.

Frank Buckley, chief executive of Down Syndrome Education International, called the findings “a wake-up call to policy-makers to focus more effort on improving education, healthcare and adult support for the rapidly growing population of citizens who have Down syndrome.”

Related post: Article: Will babies with Down syndrome slowly disappear?

See also:

Women’s choices on Down syndrome screening must be informed ones — By Carol Boys, [UK] Times. Boys urges that families undergoing the screening process be given non-directive counseling and accurate, up-to-date information about Down syndrome.

Actually, having a child with Down syndrome is no big deal — By Simon Barnes, [UK] Times

Belinda Benton: I had healthy baby despite Down’s syndrome risk – [UK] Telegraph

‘Down’s is still stigmatized’ — BBC (video). Natasha and Eddie Batha, whose daughter has Down syndrome, say parents need up-to-date and accurate information upon diagnosis to counter the powerful public stigma against the condition. A partial transcript is here:

He said: “You’re led to believe that it’s the worst thing that could possibly ever happen to you.
“And then you realize it’s just another human being who happens to be a little bit different.

“She just takes a bit more effort and she is a bit slower to pick up on things.”

His wife agreed that many people were misinformed about Down’s syndrome and she thinks this has contributed to the high abortion rate.

She said: “Because you have a test [during pregnancy] you think that it must be a terrible thing if it happened.

“There’s no qualifying information and I think that would be really useful to get that and it might affect a lot of people’s decision as to whether they could live with that.”

‘Most women’ end Down’s pregnancy — interview on BBC Radio 4 with Joan Morris, professor of medical statistics at Queen Mary university in London, who compiled the research, and Jane Fisher, chief executive of Antenatal Results and Choices (ARC).

From 60 Minutes, AP, Chicago Sun-Times:

Senior presidential adviser David Axelrod and his wife Susan appeared on 60 Minutes yesterday to talk about their family’s 28-year struggle with epilepsy.

Daughter Lauren is one of three million Americans living with the disease.  — more than the number of Americans who have Parkinson’s, cerebral palsy and multiple sclerosis combined. About a third of them don’t respond to treatment.

“Epilepsy is like terrorism of the brain. You don’t know when it’s going to strike, where you’re going to be,” David Axelrod told correspondent Katie Couric.

Axelrod and his wife are part of a movement that is trying to jumpstart research to find a cure. They say the disease is not getting the attention it deserves.

See also:

Axelrod remains mindful of daughter with epilepsy — AP

Axelrod’s daughter: ‘Why does Obama need so much help?’ — Chicago Sun-Times

Previous posts here.

(Photo from 60 Minutes video)