March 2, 2008

Chelsea Kirwan is brutally frank about the moment she learnt her newborn daughter had Down's syndrome.

"I felt as if I had been punched in the stomach by the world," she says.

The news also devastated her husband Laurence, a plastic surgeon well used to the horrors of working in burns units and with victims of earthquakes.

"This was the first time I'd seen him actually need to sit down because he was so shaken," says Chelsea.

All the joy the couple should have felt at the birth of their new baby failed to materialise.

Instead, they were overwhelmed by shock, as would any new parents on being given such news.

Yet their story comes with an extraordinary irony.

For the couple make their fortune from the quest for physical perfection - to become parents of a daughter with Down's syndrome may have, to say the least, profoundly challenged their ideas of what beauty is, whether it resides in the spirit or the body and whether cosmetic surgery is truly worthwhile.

Laurence himself has admitted that he suffers what he calls "the curse of the plastic surgeon" - he is unable to look at a person without "mentally improving their face" in his mind's eye.

So, perhaps it is no surprise he says he "may well consider" cosmetic surgery to correct his daughter's features - in his own graphic words: "eyes slightly wide apart, flat nasal bridge, thin lips, tongue that sticks out, thick neck" - typical of children with Down's syndrome.

Chelsea and Laurence make a glamorous couple, commuting between their beautiful homes in Connecticut and Knightsbridge.

Laurence - who at 55 is 20 years older than Chelsea - is a renowned world-class surgeon with clinics in the U.S. and Harley Street.

His skills and innovative aesthetic procedures have won him a string of celebrity clients who he is too discreet to name (notably after having upset the actress Felicity Kendal, whose signed photograph was spotted in his Harley Street office).

Chelsea cheerfully admits that she too has been happy to make use of her husband's talents.

They married, three years after meeting in 1997 through mutual friends, and Laurence operated on his wife, giving her a breast lift, shortening her nose and enhancing her lips.

In 2003, Chelsea, who had worked in pharmaceutical sales in New York, took over the running of her husband's practice in Connecticut and still works there part-time.

But there was no preparation for what was to happen after she was admitted to hospital in February 2006.

The pregnancy had been problem-free and at 33, Chelsea was too young to be offered an amniocentesis - the testing of the amniotic fluid that gives information about possible congenital disorders such as Down's syndrome.

"The labour was straightforward, too," says Chelsea. "Our baby Ophelia looked fine so far as we could see, and when Laurence asked if she was healthy the answer was an unhesitating "Yes".

"She was taken to the nursery for the night but the following morning when I asked the nurse to bring her to me I was told her temperature was a little high and that a paediatrician would be coming to see me and Laurence. But no alarm bells rang.

"The paediatrician did not mince his words. 'We have some concerns about Ophelia,' he said. 'We think she may have Down's syndrome.'

"Laurence immediately started asking questions - he said that his head was swimming and 'full of those stereotypical images of Down's syndrome children, overweight and retarded'.

"I had never seen a baby - or met anyone - with Down's syndrome before and, like Laurence, had this vision of adults that I'd seen trooping around on outings with their tongues lolling from their mouths.

"I wasn't thinking anything - I couldn't think at all. It was as if everything had been knocked out of me.

"But when Ophelia was finally brought to me, I immediately had the urge to hold her close and kiss her.

"I was doing this impulsively - because I felt she was hurt - in the same way as you comfort your child who has fallen over."

The doctor also revealed that Ophelia would need open-heart surgery within weeks - she had been born with a hole in her heart and a valve missing, a common condition in those who have Down's.

The next three days in hospital Chelsea describes as a haze.

"It's such a shame that we never celebrated Ophelia's arrival and I will always feel sad and guilty about that."

None of their friends knew how to react to the news, and the popular couple were sent only two bunches of flowers.

"But then Laurence got tough," says Chelsea. "He said, 'I know this is upsetting but we are her parents and if we don't stand up for her, who will?'"

Still in a state of shock, Chelsea, with the help of her mother Leia, made a concerted effort to find out everything she could about her daughter's condition and to seek support from other parents in her position.

"I could not think anything except, 'I have a Down's baby' over and over," she says.

"There was no excitement, no new-parent euphoria, which was a terrible shame."

Laurence did not know how to deal with Ophelia at first and felt alienated from her.

"He said he felt angry with himself for being full of self-pity," says Chelsea.

"But then he helped me to understand that life for a person with Down's in the 21st Century can be very different to how we think it might be.

"He was the one who kept trying to find solutions rather than problems.

"One research project that gave us great hope in those early days and which, I think, did much to drag me out of my blur was finding out about research undertaken by Professor Bill Mobley at the Lucille Packard Children's Hospital in California.

"He is looking into a cure for mental retardation in Down's and has had some success. We are doing all we can to raise funds for this.

"Because of Laurence's work in London, I also found The Down Syndrome Educational Trust in the UK particularly helpful in making me realise that these children could overcome obstacles to lead fulfilling lives. But over those first few months I never questioned the fact that I loved my baby," she says.

The couple had been married before (Laurence has three grown-up daughters and a son, Chelsea has a 14-year-old daughter, Tailor, and together they have four-year-old twin girls Lilibet and Felicity) and so with the seven children between them it was crucial that they all bonded with Ophelia from the start.

This, Chelsea says, happened immediately. "When someone said to Tailor, 'I'm so sorry to hear about the baby,' she said right back, 'Well, don't be sorry - there's nothing to be sorry about.'

"And the twins, who were only two when she was born, couldn't stop telling everyone how beautiful and cute their baby sister was - and still do."

Over the first year the couple scrutinised Ophelia's every move and watched for milestones that would indicate development.

"I'll never forget the day Ophelia transferred a toy from one hand to the other - something that passes unnoticed in other babies. These small things became my priorities."

Today she says that she doesn't think she would have terminated the pregnancy had she known of Ophelia's condition but she doesn't know, "because I wasn't put in that situation".

"It was really only after her first birthday I knew Ophelia was a blessing. None of us can contemplate a future without her.

"Laurence, who always maintained he wasn't a baby person and had never changed a nappy in his life, took to getting up in the night for Ophelia.

"She's the love of his life. I thought I was, but she is his world.

"Of course I wanted the perfect child, who doesn't? But it took me a while to put things into perspective and ponder the question, 'What actually is perfect?'

"A friend of mine's son was deemed to be 'the perfect child' and he committed suicide."

Now over their initial feelings of despair, the family are having to cope with much bigger social issues - ignorance and prejudice.

"We were guilty of it at the beginning but I didn't realise quite what a battle it would be."

There are various scales of Down's syndrome and, at two years old, Ophelia is termed "high-functioning".

She now attends an independent mainstream nursery school for two-and-a-half hours, two days a week.

She also has physical therapies to strengthen the muscles in her mouth, and speech therapy.

But Chelsea was shocked to find that when she had earlier tried to put her daughter's name down for another nursery, the head had rejected Ophelia and expressed no interest in meeting her.

"I was outraged. That's when I realised what I was dealing with and what a fight getting the best for her might be."

But although the couple have come to adore their daughter, they are still grappling with the idea of "correcting" her looks, a possibility that will outrage many.

Laurence and Chelsea will consider surgery when she is older, for example, to correct Ophelia's slanting eyes, flat nasal bridge, thin lips and thick neck.

"If Ophelia said, 'Dad, my nose really bothers me,' then it is a consideration.

"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," says Chelsea.

But could Laurence be too keen to try to correct Ophelia's physical imperfections?

"No, he's not plastic-surgery-happy; he's logical, realistic and open-minded.

"He wouldn't operate on her himself, he would get the best person he knew to do it - but only if she wanted it and he could see that it could enhance her quality of life.

"But certainly not before she's 18 and only if she was capable of making a good decision."

No matter how many operations Ophelia undergoes in her life, no amount of physical augmentation will compensate for the fact that she will always suffer from learning difficulties.

Chelsea adds: "It's a matter of self-esteem; if you're not happy with yourself then why shouldn't you fix something to make it better? And all I want is for Ophelia to be happy.

"We've always encouraged our kids to follow their dreams and we don't expect any less of Ophelia. But when I look at my beautiful baby, any sadness I may have momentarily goes away.

"We thought we were happy before Ophelia came into our lives - but that's nothing to how happy we are now because of her, not despite her.

"My so-called 'imperfect' child was really my perfect child - it just took me longer than it should have done to realise."