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The Sunday Times May 28, 2006
Babies with club feet aborted
Lois Rogers
MORE than 20 babies have been aborted in advanced pregnancy because scans showed that they had club feet, a deformity readily corrected by surgery or physiotherapy.
According to figures from the Office for National Statistics covering the years from 1996 to 2004, a further four babies were aborted because they had webbed fingers or extra digits, which are also corrected by simple surgery. All the terminations took place late in pregnancy, after 20 weeks.
Last year, according to campaigners, a healthy baby was aborted in the sixth month at a hospital in southeast England after ultrasound images indicated part of its foot was missing.
News of the terminations has reignited the debate over how scanning and gene technology may enable the creation of designer babies. In 2002 it emerged that a baby had been aborted late at 28 weeks after scans found that it had a cleft palate, another readily corrected condition.
Some parents, doctors and charities are increasingly worried by what they see as a tendency to widen the definition of serious handicap. The handicap provision, which does not exist in most other countries, permits abortions to be carried out until birth. It was intended to save women from the trauma of giving birth to babies likely to die in infancy.
Club foot is one of the most common birth defects in Britain. About one in 1,000 babies is affected, meaning that 600 to 700 infants are born with the condition every year. It results in the feet pointing downwards and inwards, and in severe cases can cause foot deformity and a limp.
However, it is relatively easy to correct and in recent years techniques of splints, plaster casts and boots to set the foot into the correct position have replaced the need for surgery.Club foot is occasionally connected with serious but rare chromosomal defects, although specialists point out that these can also be screened out before birth with additional tests.
Despite the ease with which it can be treated, the perception that club foot is a serious birth defect has remained among some parents and doctors.
It was strongly suggested that we consider abortion after they found our baby had a club foot, said David Wildgrove, 41, a computer programmer from Sheffield, whose son Alexander was born in 1996. I was appalled. We resisted, the problem was treated and he now runs around and plays football with everyone else.
Pippa Spriggs from Cambridge, whose son Isaac will celebrate his second birthday in July, was also dismayed when a scan halfway through the pregnancy revealed that her baby had the defect.
Abortion certainly was not openly advised, but it was made clear to me it was available, she said. In fact he has been treated and the condition has not slowed him down at all.
Others take a different view and decide not to accept the risk of an imperfect baby. Sue Banton, who founded the group Steps for parents of children with foot disorders, was troubled that a home counties couple last year decided to terminate their baby, despite counselling to reassure them it would have a worthwhile life even with a section of foot missing.
We gave them other families to talk to, but they just didnt want to know. The baby was aborted just before the 25th week, she said.
It is terrible. I know lots of perfectly nice people with this condition, and you just cant imagine them not being here.
One doctor in the north of England who did not want to be named, said a recent case in his hospital had involved the discovery of a hand missing from a foetus scanned at 20 weeks. The father did not want the pregnancy to proceed because of his perception that the child would not be able to do all the usual things like sport, said the doctor.
Naomi Davis, a leading paediatric surgeon at Manchester childrens hospital who specialises in correcting club feet, said: I think its reasonable to be totally shocked that abortion is being offered for this. It is entirely treatable. I can only think it is lack of information.
Jane Fisher, director of the charity Antenatal Results and Choices, defended the right of parents to terminate pregnancies when defects were found.
This is not part of a move towards designer babies, she said. These are difficult and painful issues.
Club foot has been no bar to high achievement. Eminent sufferers have included:
Sounds entirely reasonable to me!no1tovote4 said:I guess the progeny having an extra digit could be construed as a danger to the life of the mother. If you figure the extra digit would cause the kid, in later life, to be sorely angry at the mother and to, in the instance of anger, physically attack her for her intrasigent decision to give him life!
Kathianne said:Seems far from 'imminent danger to mother or child:
http://www.timesonline.co.uk/article/0,,2087-2200495,00.html
Mariner said:sad about intentional abortions of Deaf children. Deaf families often celebrate the birth of a deaf child, who will carry on the culture and be a native user of American Sign Language. By contrast, hearing families often experience a tragedy--from the birth of the very same child!
Like liberalogic, USMB has caused me to rethink, and partly harden, my view on abortion. I've really come to appreciate the passion and ideas of the pro-Life movement (though I think if you're pro-Life you also need to be pro-major-gov't-services-for-poor-people and pro-major-aid-to-countries-where-millions-of-children-die-from-preventable-illnesses).
Mariner.
nt250 said:That's bullshit. Being deaf is not a culture. It's what used to be called a handicap. Any family that celebrates the birth of a deaf child should be sterilized so they can't inflict their defective genes on the rest of us.
That's appalling.
nt250 said:Any family that celebrates the birth of a deaf child should be sterilized so they can't inflict their defective genes on the rest of us.
That's appalling.
I think he's saying they should celebrate the CHILD, not the deafness.5stringJeff said:So you don't think deaf people can get along in this world? Are you saying that a deaf child is any less of a child?
Mariner said:That's what I used to think before I went deaf myself.
Basically, it seems that the combination of the use of a unique language and the shared experience of deafness are sufficient conditions to create a strong feeling of identity and culture. I feel it myself. I'm writing right now from the American School for the Deaf, which was the birthplace of American Sign Language, and the oldest special ed school of any kind in the Western Hemisphere. I'm a doctor who works with deaf kids, and so I get to see all the time how a Deaf family is comfortable and happy with the birth of a Deaf child while a hearing family can be torn up by the very same experience. That difference alone gives some sense of why it's appropriate to say "Deaf Culture."
Next time you get a chance, visit a Deaf school or university, hang out with a Deaf family, or check out a Deaf theater production. You'll get a sense of a very different way to be perfectly happy, with no sense of handicap at all--and no desire to be "hearing." ASL is expressive and dramatic; by contrast, from the Deaf perspective, all hearing people look wooden, like Al Gore.
Mariner.
I started a sign language class... quit when my daddy went into the hospital. It was very cool. We "sang" Silent Night as our project. It was like dancing; it really made me FEEL the song more than just listening to it. You have to ACT out your emotions, which serves to make you more aware of them. Maybe I'll have to sign up for that class again...5stringJeff said:Wow... you certainly have an interesting job Mariner! Kudos to you!
Every now and then, I see people in church (usually non-deaf who know ASL) signing along with the songs. It's very cool!
Mariner said:That's what I used to think before I went deaf myself.
Basically, it seems that the combination of the use of a unique language and the shared experience of deafness are sufficient conditions to create a strong feeling of identity and culture. I feel it myself. I'm writing right now from the American School for the Deaf, which was the birthplace of American Sign Language, and the oldest special ed school of any kind in the Western Hemisphere. I'm a doctor who works with deaf kids, and so I get to see all the time how a Deaf family is comfortable and happy with the birth of a Deaf child while a hearing family can be torn up by the very same experience. That difference alone gives some sense of why it's appropriate to say "Deaf Culture."
Next time you get a chance, visit a Deaf school or university, hang out with a Deaf family, or check out a Deaf theater production. You'll get a sense of a very different way to be perfectly happy, with no sense of handicap at all--and no desire to be "hearing." ASL is expressive and dramatic; by contrast, from the Deaf perspective, all hearing people look wooden, like Al Gore.
Mariner.
Mariner said:learned sign language, most of my signing coworkers were women. After a couple of years, a deaf man took me aside and said, "You're signing like a girl." He pointed out that women typically sign with more precise handshapes and movements. I didn't just have a "hearing" accent, I had a female "voice"!
The highest compliment I can receive now is when a Deaf person assumes I was born Deaf and learned sign language natively. I spend enough time in schools, with the rapid fire, slangy sign of the kids, that I can do pretty well, though the ultra-high-speed fingerspelling that natively deaf people can do will always be beyond me.
Anyway, I'm afraid we've hijacked this abortion thread. Genetic testing can work the other way too--some Deaf people are seeking purposefully to conceive a Deaf child, by making sure they and their partner have the same gene for deafness.
As for the general issue of deafness being a disability versus a variant of normal, I don't think this is a question science can answer--it's a value judgement. You can either say that we have ears that are meant to function, or you can say that human hearing appears to be like, say, human height--a variable thing where some people have more and others less, and genes for the whole range naturally exist in the human gene pool. Personally, I take my cue from Deaf people who feel whole and happy. I can't question their experience (or my own--I'm perfectly comfortable being Deaf). Who am I to call someone "disabled" who doesn't actually feel disabled?
Another way to look at it is to unpack the whole idea of "disabled" and "normal." I think "normal" is mostly a fake construction most of us use to ward off fears about being different and hence unacceptable. All of us have variable capacities in different areas and throughout our lives. There's no simple way to decide what's "normal." And many a disabled person shows far greater achievement and growth than many a "normal" person. I don't see this as "overcoming" disability. I see this as the natural spark of life that strikes when one experiences first-hand the fragility of one's body and hence the preciousness of every moment and experience.
Obviously, I could go on and on...
Mariner.
