A Fathers Story Sunday Magazine The Canberra Times 8th April

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A Fathers Story Sunday Magazine The Canberra Times 8th April Powered By Docstoc
					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.

				
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