11 March 2008

ethical debate: cosmetic surgery to hide Down's Syndrome

I am quite fascinated by ethical debates. They show the murky grey area between what is morally right and morally wrong. There are many of these, and while I sometimes do not agree to a point of view either way, I find them thought-provoking.

The UK Daily Mail recently reported about a mother's wish for plastic surgery to 'normalise' the appearance of her daughter with Down's Syndrome.
Why this mother believes her Down's syndrome child should have plastic surgery to help her 'fit in'
Last updated at 08:48am on 10th March 2008

Ophelia Kirwan is a beguiling toddler with wide eyes and a mop of blonde hair. At the age of two, she's too young to know that she has Down's syndrome, or to understand why this makes her different from other little girls.

And as she plays in her pink nursery surrounded by toys and teddies, she is blissfully unaware that her distinctive features this week placed her at the centre of a fierce ethical debate.

At the weekend, her parents - a world-renowned plastic surgeon and his surgically-enhanced wife - admitted they are considering altering their daughter's appearance with surgery in the future to help her become more 'accepted' by society.

Considering surgery: Chelsea Kirwan with her daughter Ophelia

Laurence Kirwan insisted that he would make that decision if Ophelia - who is two this month - reached the age of 18 and was being unfairly judged on how she looked.

The procedure, he explained in the blunt words of a surgeon, would correct "eyes slightly wide apart, flat nasal bridge, thin lips, tongue that sticks out, thick neck".

But would the decision to erase these tell-tale features of Down's syndrome be made with their daughter's happiness in mind? Or would it simply be an attempt to mould a child into a society which cares more about looks than vulnerable children?

Her mother Chelsea said: "It just isn't right that Ophelia and others like her should be judged on how they look - particularly if they are turned down for a good job that they could handle.

"It's a matter of self-esteem: if you're not happy with yourself then why shouldn't you fix something? All I want is for Ophelia to be happy."

While their admission is extraordinary, Laurence and Chelsea - wealthy and doting parents who have two non-Down's older daughters - are not alone in their desire to alter the natural appearance of a child with Down's.

At least one other couple have already gone ahead with radical and painful cosmetic surgery to alter their daughter's Down's syndrome "appearance" to help her "fit in" with her peers.

By the time Georgia Bussey was five, her parents Kim and David, from Pimlico, South-West London, had put her through the ordeal of surgery three times.

In the first procedure at the Chelsea and Westminster Hospital, her tongue was reduced to stop it protruding. Then, folds of skin were removed from the inner corners of her eyes to take away the "slantiness" characteristic of Down's syndrome. Finally, she had surgery to stop her ears sticking out.

The couple - who deliberated for a year before arranging for their daughter's face to be surgically altered - claimed, like the Kirwans, that they were simply motivated by love for their child.

Kim insisted: "We live in a society that judges people by the way they look. Society is not going to change overnight - so Georgia has to fit into society, rather than society fitting into the way she is.

"The people who criticise us are usually people who don't have Down's children of their own. They don't see the teasing that goes on and the problems Down's children have. I just want to give Georgia a helping hand - an "edge" to get on in life."

Perhaps her attitude is understandable, yet the surgery that Georgia Bussey went through was criticised by the Down's Syndrome Association, which says no one should have to have an operation to make them more visually acceptable to society.

Moreover, there are many parents with Down's children who are horrified at the idea of somehow airbrushing their children's appearance, as though having the condition is something to be ashamed of.

Some claim that the procedures - on a child who could scarcely comprehend the pain they were suffering - were tantamount to child abuse.

Rosa Monckton, the wife of former newspaper editor Dominic Lawson and mother of 12-year-old Domenica, who has Down's syndrome, agrees.

"What these children bring to our lives is something so deep and extraordinary, it is humanity stripped to the bone," she says.

"It is not about how they look, but who they are. First and foremost, they are our children, children to be loved and cherished - not tampered with and altered because they look slightly different.

"It's a sad indictment of what our must-have society has become - the expectation is for something perfect. Anything which isn't aesthetically perfect - be it breasts, bodies or the faces of children just out of babyhood - must be fixed until it is. These are grotesquely skewed values.

"Our natural instinct as parents is to cherish and love our children. Not to gaze at the faces of toddlers and wonder what we might change surgically later on.

"The thought of allowing your own child's face to be cut open in an attempt to make them more 'acceptable' to society is appalling. Perhaps these parents are struggling to come to terms with the shock - and it is a shock - of finding out that your child won't be exactly as you expected."

When Rosa's daughter Domenica was about three weeks old, she and her husband were contacted by Professor Brian Stratford, an expert in Down's syndrome who had a Down's daughter himself. He had read an article that Dominic had written in The Spectator magazine describing Domenica's birth, and offered to come and examine her.

Rosa says: "I was still in shock from the birth and the diagnosis, and was sitting in the kitchen with Domenica and the professor when my eldest daughter, Savannah, came running in.

"She was an impossibly beautiful two-year-old, with enormous eyes. Brian looked at her, looked at Domenica in the cot, and looked at me. 'What did you expect?' he asked. 'Another designer child off the production line?'

"It was a shocking moment - those words came as a physical blow. It made me really think about how much of a parent's love for their child is transferred ego. How much the need for beauty, perfection and achievement is simply the desire for parents to bask in the reflected glory."

When Domenica was born on June 1, 1995, it was to one of Britain's most prominent families. Father Dominic - son of former Chancellor Nigel - was the editor of the Sunday Telegraph, Rosa was a successful businesswoman and close friend of Princess Diana, while Domenica's aunt was television cook Nigella Lawson.

Rosa, whose older daughter Savannah is now 15, says: "I had lost my previous child six months into my pregnancy, so this baby was going to be a new start for us. I was induced, so we knew exactly when she was going to be born. We had everything ready - it was all going to be perfect.

"But it was obvious from the moment she was born that things were not perfect. Domenica was blue and floppy, and I was told almost immediately that she had Down's syndrome.

"Nothing could have prepared me for that shock, and I found it so hard. I'm ashamed at how difficult I found it.

"But I was grieving for the child that I thought I was going to have - and the future I had always imagined for her. Even in my darkest despair, I wasn't worried about what my daughter was going to look like; it was a fear of what her life was going to be like.

"Domenica was three weeks old when Professor Stratford made the remark about designer babies.

"It was a turning point for me - I started to question my own feelings, and my own desire for the perfect child. I realised that I actually loved my baby how she was - and I wanted to fight for her.

"We christened Domenica on July 1, when she was just four weeks old. My brother sang a lullaby he had written for her, and a psalm was read about not being frightened. I walked out of the church feeling so much happier and stronger."

Among Domenica's godparents was Rosa's close friend Princess Diana.

Rosa says: "She held the baby and saw instantly how beautiful she was - and she asked to be Domenica's godmother. If she was still alive now and heard this row about whether children with Down's syndrome should have cosmetic surgery, she would have picked up the phone straight away.

"The irony is that Diana - one of the most beautiful women in the world - knew that every child was beautiful. She would have been so upset to think about children undergoing surgery to 'fit in' with society."

Yet both Ophelia and Georgia's parents disagree.

Kim Bussey argues: "No one says anything if a 'normal' child has had his or her ears pinned back, for example. Why should it be any different for a Down's child?

"At first, my husband David was against the idea of surgery. Georgia had been very sick as a child and David felt she'd been through enough with her faulty heart valve.

"But then she had a couple of falls and her teeth went through her tongue - which was very large and protruded, impending her speech and making her dribble constantly - and that made our minds up. It was clear that Georgia was going to be better off with a smaller tongue.

"Even though there was no medical reason why she should have it done, I saw nothing wrong with wanting to improve Georgia's appearance."

The couple then decided to have surgery to have her eyelids "corrected" at the same time.

"I am not trying to hide the fact Georgia is a Down's child," Kim insists. "But I know what kids are like and I didn't want her to be teased at school."

Yet Rosa Monckton, 54, is outraged by this suggestion.

She says: "The best thing I can do as a mother is to transfer parental love into self-esteem. It isn't about altering the face of a child, it's about giving that child the self-confidence to be who she's able to be. I wouldn't consider plastic surgery for my older daughter Savannah any more than I would for Domenica.

"You have to believe in your own children so that they believe in themselves.

"There isn't one bit of my children's lovely faces I would change."

But why is the quest for physical perfection now so great that parents are discussing surgery to alter the faces of children too young to understand?

Rosa says: "Our glossy celebrity-led culture is greatly to blame. We have perfect faces and tiny frames leaping out from glossy magazines, and teenage girls demanding plastic surgery to look more like their idols.

"Our society is based on celebrity and power, and somehow that has sparked the quest for perfection in our children.

"It is hard to come to terms at first with a child who has Down's syndrome. I remember walking through Hyde Park shortly after Domenica was born and looking into other people's prams, almost by way of comparison.

"But as your child grows, you come to realise that every small step they take, every time they prove a doctor or a medical expert wrong, brings the most tremendous thrill.

"One of the proudest moments in my life came when Domenica ran in a school race a few years ago.

"She was utterly determined to complete it, and through sheer determination she forced herself to keep running. She came last by about half a mile - but the whole school stood up and cheered. I stood there with tears running down my face.

"Nobody who applauded my daughter that day considered the way that she looked. They were just celebrating her achievements - as I do every day of my life.

"In many ways, I consider myself lucky that Domenica does look different, because it alerts people to her condition. I have friends with autistic children, and when these children misbehave in public, everybody just assumes they are naughty.

"When Domenica runs around a luggage carousel at the airport, or if we lose her because she simply wanders off, people understand that she has Down's syndrome.

"Domenica herself knows that she has Down's, and she is beginning to realise that she looks different. It doesn't bother her.

"Recently, someone came to see us, and I heard Domenica say: 'I've got Down's syndrome and I'm small - what do you think about it?'

"She is shorter than her friends, but we wouldn't consider stretching her on a rack any more than we would consider paying for her to have painful surgery, just to make us feel 'better' or to make her 'fit in'.

"I look at my confident and happy daughter now and I honestly can't imagine her any differently."

Meanwhile, in a pretty bedroom in Knightsbridge, little Ophelia Kirwan continues to play with her toys and giggle with her big sisters - unaware of the controversy which is swirling around her.

It is for her parents to decide whether they will choose to put their daughter under the knife when she is older.

Whatever their decision, Rosa Monckton is certain of one thing: they should love their daughter because of who she is - not despite it.
I do agree with the point that Ophelia's appearance is part of her condition, which alerts others of it.

On Sunday (2 March) two young girls with Down's Syndrome knocked on my front door letting me know they were lost, and asked for help to return home. As I could tell that they were special, I made a greater effort in communicating and trying to understand them.

I can understand Chelsea the mother's intentions, but she should talk with other parents before making a decision.

Personally, I think other people have the problem if they do not accept her daughter for who she is. Perhaps the real issue is education and acceptance.

Back at work today. Thankfully, staff where I work are able to claim the hours that we spend travelling on flights for work, so I should have enough hours for a day off soon (or two).

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