He seemed unperturbed ... caught up in his own cleverness at labelling a rare syndrome

For Elisabeth Winkler, learning of her daughter Maude's disability was earth-shattering. For the heart specialist delivering the news, it seemed something of a triumph
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When I first found out that Maude, my third child, was handicapped, she was three years old. Until then I had been vaguely aware that she was slow to smile, to talk and to walk: she had said her first Da-da words, for example, just after her real dad died when she was 18 months old. Looking through the lens of maternal adoration, I couldn't see that anything might be amiss because Maude was such an open, loving and communicative creature.

So I had no sense of apprehension as I sat in the hospital corridor waiting for Maude to be examined. We were there to see a heart specialist because my father, a GP, said he had detected a heart murmur. I was thinking guiltily: I'm wasting NHS resources because my father is over-zealous. I remember walking into a room darkened for an echo-cardiogram and helping Maude off with her T-shirt. As usual she was obliging, and greeted the consultant and his two medical students with her usual chirpy, "Hello, how are you?" Instead of being charmed, the consultant turned to his two students and said, "Note the typical cocktail-party chatter."

From that moment, my memories are like cinema stills. The next scene is the consultant announcing that my daughter had Williams Syndrome, a congenital disability which, like Down's, retards development. She had, he told me, the classic signs: a narrowed heart artery and "obsessive meaningless chatter. Your daughter's IQ will never be more than 70". He seemed unperturbed, even cheerful: I will never forget the way he seemed more caught up with his own cleverness at labelling a rare syndrome than how his words might have sounded to me. I will also never forget the look of one of the students. He seemed to be vibrating with discomfort. Suddenly he broke rank and spoke, his eyes concerned, his tone serious. "There is a support group for parents of children with Williams Syndrome; they're very good. Get in touch with them," he said.

Next still: outside the hospital, crouched by Maude's pushchair, strapping her in; as I stand up, the sky breaks into pieces above me. That's how it felt anyway. Earth-shattering diagnosis, alone on the streets of London, with my suddenly damaged child.

I am not alone in this experience. Last month, the charity Scope (formerly the Spastics Society) brought together 22 other organisations, including the Down's Syndrome Association, the National Autistic Society and the Royal College of Nursing, to address the issue. "Parents never forget how they learn about their child's disability. It is an event that can colour their lives for a long time," says Dr Richard Newton, medical director at Manchester's Children's Hospital. According to Scope, only 37 per cent of parents were satisfied with the way they found out that their child had a disability. One woman described how the first time she heard about her daughter's diagnosis was in a passing remark that her child's sleeping difficulties were "very common in children with cerebral palsy." Another was told, when her son was a baby, that he would never be able to walk. He started walking aged two.

The Scope report, called Right from the Start, recommends that predictions should be avoided (no one knows what a child is capable of), that a parent shouldn't be alone when they first receive the news (as I was) and that plenty of time should be made available to ask questions (as I needed).

Delivering a depressing diagnosis is an unavoidable part of a doctor's job, whether to parents like myself or someone suffering from an incurable disease - so why are some so bad at it? "The majority of doctors are not consciously cruel, but they are trained to see patients as body parts rather than whole people," says Maria Shortis, a grief counsellor and member of a parents' support group for children who have died or suffered brain damage following heart surgery. "What doctors need is a framework of emotional literacy."

"It is natural to feel embarrassed and uncomfortable when breaking bad news and some doctors may cover up this discomfort with a patina of hardness," says Professor Sir Leslie Turnberg, president of the Royal College of Physicians. He chaired a report published this spring, which stated that more than half of the complaints to hospitals or health authorities are related to poor communication; the report also recommended that the teaching of communication skills become an integral part of clinical medicine.

Are doctors scared of getting lost in an emotional whirlpool? "Some doctors may worry that responding to a patient's distress will mean the loss of their professional detachment," says Sir Leslie. "But there are techniques to overcome this, as we can see in the training of Macmillan cancer nurses. What doctors need is ongoing training and good role models in how to strike a balance between compassion and detachment."

Perhaps there's no good way to break bad news. However you are told, you are likely to feel devastated and angry - after all, messengers bearing news of defeat were killed in ancient Greece. "I've had to break a lot of difficult news," says Dr Chris Johnstone, an NHS psychotherapist who used to be a hospital doctor, "and I've found that when I've taken the time to be clear and honest, patients are not angry but grateful.

"I usually start by saying, `What have you been told so far?' because problems arise from assuming that the diagnosis has already been given. I also ask, in cases of terminal illness, `how much detail would you like?', because some people only want headlines whereas others want to know everything. No one expects a doctor to have all the answers but they do expect the truth, not bullshit."

Back to my story. My next concern was how, in my turn, to break the news to Maude's elder sisters and my parents. I feared the humiliation of breaking down; obscurely, I felt I'd let my parents down by producing a sub-standard grandchild. To buy myself recovery time I wheeled Maude into the poshest brasserie in South Kensington and ordered a coffee.

How did I strike up a conversation with the man at the next table? All I know is that I needed to offload and he must have asked the right questions because soon I was telling him about my daughter's diagnosis. We gazed down at Maude, now asleep in her buggy between our tables. "IQ is not the only way of measuring intelligence," he said thoughtfully. It turned out that this man, down from Edinburgh on a family trip, was in children's education and something of a specialist in learning difficulties. He talked about the work of Rudolph Steiner and said, "Each child with special needs is an individual with their own unique gifts and qualities." I never saw this man again but this encounter offset the doctor's diagnosis and I felt my precious child being handed back to me.

Maude is 12 now and I've just read this out to her. She says: "Thank you for writing the article to show the world that I'm not stupid like most people think. I have a lot of abilities like making friends easily. I also love making music although it sometimes makes me cry."

Apart from the initial bombshell, I have been well supported; from my parents, who never ceased seeing Maude as the same loveable grandchild, to my GP, who set in motion an educational process that has worked on her weak areas (like hand-eye co-ordination and patchy concentration) and supported Maude's strengths, which include emotional literacy. On reflection it is ironic that it was the consultant, not my daughter, who needed help with communication skills.

Williams Syndrome Foundation (01452 812277).

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