The day that changed our lives

`Perhaps it would be better for everyone if she just passed away'

The father

AT 9.45 am on January 9th, 1992, our baby arrived. It was a girl, just as we had wanted - our luck had held out again. We now had a boy and a girl. "It's my dream come true," Allie remarked. It was about to turn into a nightmare. My first remark to Allie was: "She looks like a little Buddha." I went off to telephone both sets of grandparents and tell them their first grand-daughter had arrived safe and sound. Whilst I was away, Allie studied every detail of her newborn child. At first, she seemed perfect in every way. But Allie started to feel something was wrong. Sarah had small, protruding ears, a round face and a wide bridge of the nose.

There was a large gap between Sarah's big toe and the rest of her toes, and her fingers were short and stubby. Allie grabbed Sarah's hand and searched for the palmic crease, but couldn't see a significant line. Her mind in a whirl, she told the midwife that she thought that Sarah had Down's syndrome features, hoping to be reassured. Frighteningly, the midwife replied: "I'd better call the paediatrician."

I returned 10 minutes later and Allie told me what had happened. I took Sarah out of her cot, held her in my arms and stared at her. It was immediately apparent that she did indeed have Down's syndrome. How could I not have noticed the obvious features when she was first born? Her eyes were almond-shaped, her neck was short and thick, and the back of her head seemed somewhat flat.

The consultant arrived and, after examining her, said that yes, she thought Sarah had Down's syndrome. She apologised, as if she bore some blame, and hugged us both. I picked Sarah up, held her closely in my arms and whispered to her: "Oh Sarah . . . Sarah . . . what have you done? You've got it all wrong . . . " This wasn't how it was supposed to be.

As it is common in children with Down's syndrome to have heart defects, Sarah had to have a scan. As she was connected to the various electrodes, leads and paraphernalia , I looked down at this tiny creature and felt very little for her other than sympathy that she had to start her life in such disastrous circumstances. Perhaps, if she had an inoperable heart condition, it might be so serious that she would not survive for very long. Perhaps if it was serious, she might have to undergo major surgery on a number of occasions. Perhaps, if she was not going to have any quality of life and with a future of poor health and a severe learning disability, then perhaps, it would be better for everyone - especially her - if she just passed away . . .

I was looking at my daughter, no even a day old, and wishing her dead.

Andy Merriman

`Would my father bring the video camera?'

The mother

THE hospital porter came to wheel Sarah and I to the post-natal ward. I wondered if he considered why I looked so glum after what is meant to have been such a glorious event. After all, there was this sweet newborn baby sleeping calmly beside me. I knew my parents would be coming soon and two thoughts struck me about how they would react. How on earth would my mother take the news? She had helped me take such tremendous care with every part of my pregnancy: ante-natal exercises, insisting on healthy eating and generally preventing me from doing too much whenever she could. Where had my mother's vigilance got us? More superficial, perhaps, was the thought about my father. Would he bring his video camera and record the early hours in hospital, as he had done with his other grandchildren?

I was wheeled into the side room of the post-natal ward and tried to avoid the looks of the other mothers. The midwife helped me into bed and she left. I was alone with Sarah for the first time. I looked at her, peacefully sleeping, and felt nothing. No rush of love, of protectiveness or even pity.

I picked her up mechanically and held her to try to evoke some emotion. I felt dead and returned Sarah to her cot. My mother and father appeared and, soon after, Andy's mother. Despite their obviously strained expressions, they were all loving and caring and I began to talk about Sarah having Down's syndrome. My father had indeed brought his ideo camera and filmed the scene from time to time, at least this was no different from Daniel's birth. I loved him for this as I did my mother for not even hinting at her own anxiety and pain.

Two boys burst through the door - Tom and Nicholas, my nephews - to view their new cousin, and then my sister appeared. I felt so envious. She had two "normal" children and was never going to have to face the hardship I was sure was ahead of us. I only appreciated later that Sarah had changed everything for every family member. My parents were grandparents of a Down's syndrome baby, Carey was aunt to a Down's syndrome baby, and Tom and Nicholas were cousins of a Down's syndrome baby. New identities for everyone. The ripples were to go on and on.

Later, Andy returned with our son Daniel. "What have I done to you?" I whispered to myself as he came running in to see his new sister. I had planned not to be holding my second baby when Daniel visited, as all the books said this could help to reduce the levels of jealousy in the older sibling. That was one problem I didn't have. I wasn't holding her because I didn't feel like holding her. Photos were taken and we posed rigidly. For Daniel's sake I tried to look happy, but inside I was full of dread. Eventually, the family left and Sarah and I were left to our devices.

Soon after midnight, there was a knock on the door. It was the junior doctor, who had been present in the labour ward when Sarah had first been examined. We talked for quite a while, and I was extremely impressed by her awareness, sensitivity and philosophical approach to what had happened. She eventually took blood from Sarah, which would be sent away for likely confirmation of her diagnosis. Sarah screamed as the blood was drawn and I was shocked to realise that I was so emotionally detached that I felt nothing about her cries of pain. I felt ashamed and guilty.

Allie Merriman

`I was struck by the love Daniel displayed towards his sister'

The grandfather

WHEN Andy telephoned with the news that Alison had given birth to a bonny girl, I thought how lucky I was to have a new grand-daughter to complement the three grandsons who gave us so much pleasure. My wife and I had to go out early that morning, and we gave the good news to everyone we met. Shortly after returning home we received a further telephone call giving us the news that the baby had Down's syndrome.

In my mind's eye, I saw a group of eight to 10-year-olds dressed in dowdy clothes shuffling along a path in the park, with very limited language - and with no one making an effort to do anything to develop their abilities. We did not feel there was much to celebrate.

One of the first decisions I had to make was whether to do my usual videoing of the new baby. I decided to act as I had with the other three grandchildren, and try to be as cheerful as possible.

We drove over to the hospital and, with some trepidation, entered the maternity wing. Alison had been allocated a side room which gave more privacy. All our congratulations and small talk felt a little artificial, and my feelings for Alison, Andy and the baby were more of sorrow than joy.

The thing that struck me most over the first few months of Sarah's life was the obvious love Daniel displayed towards his sister. The tenderness surprised me. When a similar tenderness was also shown by Sarah's cousins, Tom and Nicky, I started wondering whether these very young children had an instinct that made them feel Sarah needed even more support than other babies.

John Wellemin

`It was especially hard for me. Lightning had struck twice'

The grandmother

WHEN Sarah was born with Down's syndrome, I may have appeared unconcerned. But inwardly I suffered. I was as devastated as any of the family. But I felt I needed to show strength and encouragement to Andy, Alison and to my first grandchild Daniel, on whom I doted. I wanted them to know they had my whole-hearted support. Whatever decisions they made, I would back them to the hilt.

It was especially difficult for me since I had always had two fears with babies: cot death and Down's syndrome. Both now haunted me. I lost our second son, Christopher, in a cot death at nine months. Here was the second. Lightning had struck twice.

But I mustn't show the inevitable emotions. So, when Andy and Alison decided to accept Sarah into the family circle, and do their best to help her to be as 'normal' as possible, I would go along with that. It did not come easily. As I cradled her in my arms, I did not feel the love and warmth that I should have done. Here was my new grandchild - slightly imperfect, a piece of porcelain that was chipped. Would I ever come to terms with it? But what was I worried about? That she wouldn't be like other children, or that she looked so different? That people might stare and whisper denigrating remarks? There is a long way to go and a lot for her parents to contend with. It is the future that is the main concern.

Jean Merriman

`I know Sarah has Down's syndrome but I do not notice it'

The cousin

MY first memory of Sarah was a tiny, redfaced baby in my auntie's arms. I was three and a half. I did not know anything was wrong because I could not remember any other births (my brother is 23 months younger than me, and my cousin Daniel 14 months younger). Now I know Sarah has Down's syndrome but I do not notice it. I think Down's syndrome is when the person does not learn as quickly as others. They often look the same as each other, as well as their family. Sarah is my second oldest cousin and I enjoy looking after her. Why does Sarah have Down's syndrome?

Tim Philpott, aged eight

`I am ashamed of my reaction. I said: You are joking'

The aunt

I heard the news from my parents. A baby girl. I was overjoyed. Then the phone rang again. It was Andy. "Congratulations!" I shouted. A quiet voice answered: "She has Down's syndrome." I am really ashamed of my reaction: "You are joking!" "I wouldn't joke about that," came the reply.

There had been no signs of anything wrong. The contrast between the joyous birth of my nephew Daniel, two years ago, and now was enormous. My sister is very strong and brave, and she greeted us sadly. I couldn't think what to say but she broke the ice. She talked and talked. The next few days were grim. What would the future hold for my new niece? Would she live a "normal" life? That was over five years ago. Today I feel very optimistic about Sarah's future as I think her personality will help her achieve her objectives.

Carey Philpott

`I'm a lucky man because she's my daughter'

Father's postscript

SARAH treats life like a cocktail party. She mingles and circulates like nobody I know, and possesses her own intoxicating character. When we are in a restaurant or a pub, Sarah, despite our protestations, will sometimes approach other children, introduce herself, and politely request a roll-call of the other family members.

At the present time, her age and charm protect her, but we worry that this over-friendliness could later lead to awkward situations. You see, you can't win. We should be rejoicing that she is like this, and yet we worry that this is one of the traits of behaviour in Down's syndrome.

Every day I worry about her, and wish that we didn't have this extra responsibility. I wish Sarah wasn't going to have to face all these extra problems. I don't want her to find reading and writing such a struggle, and yet I'm so proud of her. I wish she hadn't been born with Down's syndrome. But if she didn't have Down's, she wouldn't be Sarah.

Sarah has an air of confidence that I envy. She is already her own person and has an independent life separate from us. She loves going to her childminder and school, and is disappointed when the weekend arrives and she is stuck with us. She has friends of all ages and quite a few interests. She enjoys dancing, reading and likes singing. She is always the first to greet me at the door. "Nice day at work, Daddy?" If I yawn, she asks me if I'm tired, and says: "Poor Daddy."

If I look sad, she will give me a hug and say: "Cheer up, Daddy." Sarah calls me "my lucky man". When I've asked what she means, she tells me I'm lucky because I can play with her, help her read, wash her hair, buy her sweets, take her to school - and most of all because she likes me! In other words, I'm a lucky man because I'm around her. I'm a lucky man because she's my daughter. Somewhat precocious and confident to the point of arrogance, you might think. But she's right. Before conception, no one would choose to have a child with a disability. And yet I couldn't possibly choose not to have such a wonderful daughter as Sarah.

Andy Merriman

These are extracts from Andy Merriman's A Minor Adjustment, published by Pan at £6.99 in UK