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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.
(this article is from the UK so the dialect is different)
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.
May be we will be all right after all.
In the hospital caf, 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.Thenobility, 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 pin-pointable 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.
Copyright 2006 Independent Newspapers UK Limited
Provided by ProQuest Information and Learning Company. All
rights Reserved.
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