A Father’s Story Sunday Magazine The Canberra Times 8th April, 2007 The registrar looks at the baby for a second before returning his attentions to Tash and passing our newborn to the nurses to be slapped and wrapped. For a second. I sense something is wrong. They examine for just a bit too long, when you consider what an everyday event this must be to them. “Congratulations on your beautiful girl,” they say to Tash, and they hand over the purple, wrinkly baby. I ask if there’s anything we should know, and then one of them says it: “I’m afraid we suspect she suffers from Down syndrome.” Wham! I can feel one-half of my brain trying to block the information as the other half staggers under its weight. Down syndrome, my nightmare come true. Fourteen hours before, we’d gone for a scan and been told they were going to induce labour. Thus began one of the most intense weeks of my life. A squirt of prostaglandin was administered to kick-start labour; 30 seconds later, labour started and, after five hours, the 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 bloody placenta bowed out, too. By the end, it felt like she might as well have been squatting in te woods. We were just starting to recover from this extreme primal experience, when we were given the news. Poor Tash, I remember her looking at me and saying, “We’ll be all right, won’t we?” and me saying, “Of curse,” and thinking, “Aaargh!” reassuring each other seemed a lot easier than reassuring ourselves. I had to get some distance, so while Tash had a bath, I went outside, smoked cigarettes and 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 my 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 it sinks in and I’m left numb over how long a sentence I’ve been handed. 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 my mind. At first, we can’t face telling anyone. Suddenly the world is full of smug parents with their normal children. I 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 room to ourselves, so that through strength and tears we can try to come to terms with what lies ahead. Most of us are used to having a say in the major events in our lives, and being able to opt out if we don’t want certain things any more. Not here. This is a fait accompli; the only choice is to take it or leave it. Some babies with Down syndrome are fostered out straightaway. 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 have been prevented? Pregnant women are increasingly being offered screening for Down syndrome. At 39, Tash is at the older end of childbearing, so she was given a 1:80 chance of having a baby with the syndrome. At 12 weeks, we had a nuchal scan, which measured the thickness of the back of the baby’s neck – a possible indicator for the syndrome. The result of this test (which I later learnt was 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, where a sample would be collected via a needle injected into the amniotic fluid, thereby giving a definitive genetic result. However, we couldn’t have had this until the 18th week, and it came with a 1:100 chance of miscarriage. Statistics were never my forte, but we didn’t feel the risks fell 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 less easily answered questions assert themselves: if we’d had the amnio, would we have terminated at 18 weeks? Would this have caused a huge rift between us? What if we never had another chance for a child? What if we never had another chance for a child? What if we had miscarried a healthy child? And now we have this 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 the blame comes downright selfishness – I do not want my dream of wandering down our sunny street holding hands with my beautiful little girl dissolving into one where everyone stares at us because she doesn’t look right. Tash doesn’t 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 we’ve had for our child’s life, and hello to a 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, frustration and anger, we start to love our baby. She many have slanty eyes, but they’re 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, my mind starts to focus more on her, for it is she who will bear the brunt of having Down syndrome, and what she needs most is our love and determination. After four days f 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 syndrome 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’ll need surgery in a few months. Although this is common among babies with down syndrome, it seems so unfair. Hasn’t she been through enough? With breastfeeding established, Mia loses her nose tube and moves into the room with us. We start to feel less cut off from the world. We learn to bathe our baby and change nappies. Maybe we will be all right after all. In the hospital café, we approach other families with kids who have Down syndrome, each 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, bring a faith in humanity that’s hard to find in everyday life. It seems that the stance adopted towards those with Down syndrome has changed over the past 15 years. While experts once preached segregation, now, where possible, inclusion 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 Mia to speak more clearly and also to keep her unfortunately large tongue in her mouth, thus reducing one of the more obvious physical signs. 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 it’s not uncommon for them to get married or live happily with partners. From the ashes of one set of dreams and aspirations, so rises the next. And so we accept, the die is cast and now we must just get on with it. When we finally leave the hospital, we’re eager to be home and get down to life with our baby. Tash and I are twice as strong now, we were dealt the killer blow and made it through with affection and kindness, rather than blame and acrimony. We’re proud of each other. A phalanx of people from different welfare agencies is available to help us. A special-needs outfit is dropping toys off next Friday and starting Mia’s training process. The great thing about something as relatively common as Down syndrome there is a whole structure of response, support and monitoring that’s been put in place to help parents. The day after I get back, I go for a walk and realise how many different people there are on the streets, 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 survive 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 on Down syndrome * Approximately one in every 1000 babies born in Australia has Down syndrome.* There are about 15,000 people in Australia with the condition. * Although there is a greater risk of older mothers having a baby with Down syndrome, more are born to younger women, because the birth rate is higher in this group. * Down 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 syndrome is not a disease. People with Down syndrome are not ill and do not ‘suffer’ from the condition. * People with the syndrome will have a degree of learning difficulty. However, most will walk and talk, and many will read and write, go to ordinary schools and lead fulfilling, semi- independent lives. * Most people with Down syndrome can expect to live to more than 55 years of age, with some living into their 80s. * Facial features include almond- shaped eyes that slant upwards, a small nose with a low bridge, and small, low ears. * Many health problems associated with Down syndrome can be alleviated with medical and therapeutic intervention, and some alternative treatments may be beneficial. * The syndrome is named after John Langdon Down, the English doctor who first characterised it as a condition in 1862.