Down's syndrome: 'She wasn't the daughter I wanted'

Having a baby with Down's syndrome was Edward Batha's worst fear. Then Mia arrived. Three weeks after her birth, he recounts his traumatic journey through shock and disappointment to love and acceptance

The registrar looks at the baby for a second before returning his attentions to Tash and passing our first-born to the nurses to be slapped and wrapped. For a second, I sense something is wrong. They examine for just a bit too long, considering what an everyday event this must be to them. "Congratulations on your beautiful girl," they say to Tash as they hand over the purple, wrinkly baby. I ask if there is anything we should know, and then they say it: "I'm afraid we suspect she suffers from Down's syndrome." Wham! You can feel one half of your brain try to block the information as the other half staggers under its weight. Down's syndrome, my ultimate nightmare come true.

Fourteen hours before, we had gone for a scan and been told, "The baby hasn't eaten for two weeks. It's not a problem, but she's got to come out." Thus ushered in one of the most intense weeks of my life. A squirt of prostaglandin was administered to kick-start labour. Thirty seconds later, labour started and after five hours contractions were so strong Tash was sick in the bath. When someone finally examined her, she was fully dilated, and suddenly everyone seemed to appear - probing, gassing, scurrying and generally mauling her. Ten minutes later as Tash pushed, the registrar pulled. A few long tugs and the blooded placenta bowed out, too. By the end it felt like she might as well have been squatting in the woods.

We were just starting to recover from this extreme primal experience when we were given the news. Poor Tash. I just remember her looking at me and saying, "We'll be all right, won't we?" and me saying, "Of course", and thinking, "Aaaargh". Reassuring each other seemed a lot easier than reassuring ourselves. Being a man, I had to get some distance and while Tash had a bath I went and stood outside, smoked cigarettes and just thought, "My life is over." That night we went to sleep clinging to each other.

The next few days are an emotional rollercoaster. Every time your brain returns to the subject it's like testing the memory. Every time I test accepting the situation I feel sick. Incrementally, the enormity of the situation sinks in and you are left numb over how long a sentence you have been handed out. I thought I could manage being a parent, but I don't think I care enough to be a carer.

Thinking these angry, cruel and shameful thoughts is all part of this initial stage and to deny them is to store up trouble for the future. Questions such as, "Would I rather she had been born dead?" and "When can surgery make her face more normal?" cross your mind. At first, we cannot face telling anyone. This is worse for the mother, who has nurtured her child all this way and then is left wishing she had a different one. Suddenly the world is full of smug parents with their normal children. You hate them for their carefreeness. "Do you want to come to the new parents' coffee morning in the day room?" Only if I can bring my Kalashnikov.

They give us a perpetually hot room to ourselves, so that through strength and tears we can try to come to terms with what lies ahead. We are all used to having a say in the major events in our lives, and being able to opt out if we don't want it any more. Not here, though. This is a fait accompli, the only choice is to take it or leave it. Half the Down's children in our hospital are left behind. This, at least, is one subject we don't have to discuss.

Then there's blame. Who's to blame? Am I to blame? Could it not have been prevented? Every pregnant mother is offered screening for Down's. At 39, Tash is at the older end of childbearing, so the NHS gave her a 1:80 chance of having a Down's baby. At 12 weeks we had a nuchal scan, which measures the thickness of the back of the baby's neck - a possible indicator for Down's. The result of this test (which I later learn is only 75 per cent accurate) reduced the risk to 1:173, which seemed safe, if scary. But as we were still considered high-risk we were offered an amniocentesis. Here, a sample is collected via a needle injected into the amniotic fluid, thereby giving a definitive genetic result. However, this can only be done in the 18th week and comes with a 1:100 chance of miscarriage. Statistics were never my forte, but we did not feel the risks fell down in favour of the amnio test.

This is an area we revisit repeatedly in the days after the birth: did we miss something? Did we make the wrong decision? The more we try to make the maths explain it all, the more unanswerable questions assert themselves: if we'd had the amnio, would we have terminated at 18 weeks? Would this have caused huge rifts between us? What if we never had another chance for a child? What if we had miscarried a healthy child? And now we have the lovely little bundle of daughter in a cot at the end of the bed, am I really spending my time working out the ways I could have killed her off?

After blame comes downright selfishness - I do not want my dream of wandering down our sunny street holding hands with my beautiful daughter dissolving into one where everyone stares at us because she does not look right. Tash does not want to lose the pride she wants to feel in bringing up a spunky, successful girl. Coming to terms with the situation means saying goodbye to many of the hopes and expectations one has had for one's child's life, and hello to a new spectrum of mostly less palatable issues of mental and physical disabilities including possible sight, hearing and heart defects.

But with time, conversation and a good dose of gallows humour comes a philosophy and resignation, and this creates acceptance. This is the turning point. The other factor, of course, is baby Mia. Through all the tears, fears, frustration and anger we start to love our baby. She may have slanty eyes, but they are actually quite beautiful and she stares deep and long at my face. The myriad faces she can pull are fascinating; some are so charming and none different to any other baby. One evening she lies on my chest and I feel the life coursing through her. She is alive, she is who she is, and she is ours. Gradually your mind starts to focus more on her, for it is she who will bear the brunt of having Down's syndrome, and what she needs most is our love and determination.

After four days of hard work by Tash and the midwives, Mia starts breastfeeding and a huge bond is forged between mother and baby. Tash emanates happiness. Now, when she is with Mia, all negative thoughts vanish. Also, knowing that children with Down's lag behind other learning patterns, the speed with which she cottons onto breastfeeding is encouraging.

Gradually, the pressure is starting to drop. Our families come to visit and coo while friends offer love, encouragement and wisdom. The hospital finds a double room for us all and I spend nights in the hospital to be with Tash during the lonely hours when thoughts creep up in the dark. This is all the more important, as the echocardiogram has found holes in Mia's heart and she will be needing heart surgery in a few months. Although this is common among Down's babies, it just seems so unfair. Hasn't she had her share?

With breastfeeding established, Mia loses her nose tube and moves in to the room with us. We start to feel less cut off from the world. We learn to bathe the baby and change nappies. Maybe we will be all right after all.

In the hospital café, we approach other families with Down's kids, all with their own story. "You won't always feel like this," Tash is told. The gamut of the condition is wide, from one Spanish boy who could speak three languages aged seven to another who just waves a flag and still wears a nappy at 11. The nobility, resilience and love of the parents, and the friendliness of the children, brings a faith in humanity that is hard to find in everyday life.

It seems that the stance adopted towards those with Down's syndrome has moved a lot over the last 15 years. Whereas experts previously preached segregation, now, where possible, integration is the key word. Those affected are now seen to be individuals on a spectrum and a child's placing can be dramatically improved by early learning and specific training. Early intervention, for example, can hopefully teach her to speak more clearly and also to keep her unfortunately large tongue in her mouth, thereby reducing one of the more obvious physical signs of Down's. Children with the syndrome learn better by example and practical application, so tend to enjoy pursuits like acting, music and gardening. It is now quite usual for them to attend regular schools and a few have even made it to college. It is not uncommon for them to get married or live happily with partners. From the ashes of one set of dreams and aspirations, so rise the next.

And so you accept, the die is cast and now we must just get on with it. We leave the hospital 10 days after the birth, eager to be home and get on with life with our baby. Tash and I are twice as strong with each other now; we were dealt the killer blow and got through it with affection and kindness, rather than blame and acrimony. We are proud of each other. A phalanx of people from local councils, welfare, hospitals and health trusts descend on us offering help. A special needs outfit is dropping toys off next Friday and starting Mia's training process. The great thing about something as relatively common and pinpointable as Down's syndrome is that a whole structure of response, help and monitoring automatically kicks in.

The day after I get back I go for a walk and realise quite how many different people there are on the streets of London, and it suddenly seems less likely that my daughter will stick out so much. The tremors are easing and a semblance of normality is being reclaimed. Humans survived because of their adaptability and so over a short process our life has accommodated the disaster. And baby Mia, who has somehow managed to swerve through man's best efforts to search and destroy her kind, has made it. She is immensely welcome.

The facts about Down's syndrome

* Around one in every 1,000 babies born in the UK has Down's syndrome.

* There are 60,000 people in Britain with the condition.

* Although there is a greater risk of older mothers having a baby with Down's syndrome, more babies with Down's are born to younger women, because the birth rate is higher in this group.

* Down's syndrome is caused by the presence of an extra chromosome in a baby's cells. It occurs by chance at conception and is irreversible.

* Down's syndrome is not a disease. People with Down's syndrome are not ill and do not "suffer" from the condition.

* People with the syndrome will have a degree of learning difficulty. However, most people with Down's syndrome will walk and talk, and many will read and write, go to ordinary schools and lead fulfilling, semi-independent lives.

* People with Down's syndrome can expect to live on average to between 40 and 60 years of age.

Jeremy Laurance