Fraser’s Story – Part 2
The birth

Despite my heart condition the birth went well. And I was able to labour naturally with little intervention. I knew however, that all was not right. My first glimmer of recognition happened as I was giving birth to Fraser. He didn't push against me, he didn't thrust apart the walls of my birth canal, didn’t cause me to feel as though I was about to splinter. He was soft and floppy. Yet while I can tell you I knew something was wrong, knew instinctively―at another level I didn't have a clue.

So I waited. Waited for his Apgar score. Waited to hear what the standard assessment of newborn viability would reveal. How the individual scores for activity (muscle tone), pulse (heart rate), grimace (reflex response), appearance (colour) and respiration (breathing) would add up.

I knew the purpose of the Apgar test was to determine quickly whether or not Fraser needed immediate medical care―with scores below 3 generally regarded as critically low, 4 to 6 fairly low, and over 7 generally normal. Fraser scored 8 immediately after birth and 9 five minutes later. His markers of viability were fine.

However, all was not fine and within minutes he received a tentative diagnosis―whispers and murmurs placing a virtual sticker on his forehead. Whispers and murmurs immediately setting him apart from the normal neonate. Whispers and murmurs of concern. He was not a baby they wanted anything to do with―an experience they wanted anything to do with.

In a very matter-of-fact voice the midwife asked me if I had had an amniocentesis. I said no, and thankfully because I was still feeling the effects of the gas, the bluntness and insensitivity of her question didn't hit me.

To tell the truth, it didn't hit me until years later. At the time it registered as a negative and intrusive question―certainly not the sort you want to be answering moments after giving birth―in the midst of a time that should be about the celebration of a new life.

And while I can remember how much I disliked the tenor of her voice, disliked the objectifying of my son, I too had already begun a process of defining, of recognising.

I had already noted he was floppy and too red. But I guess the real moment of recognition came when he was handed to me and as a way of making conversation I suggested to Christopher our baby had downsy little eyes. At the time Christopher didn’t respond. And I remember feeling slightly miffed. But it wasn’t until years later that I realised his silence had been, not because he hadn’t wanted to chat, but because at that moment he’d let his dread, fear and sadness of what I was suggesting go straight over my head.

Unconsciously though―even then―I knew my son had Down syndrome, but I couldn't take it in, couldn't feel my way there; I needed time. But time is rarely an option in hospital and the paediatrician (who we knew from the birth of our first son) was paged immediately.

Disability and the medical paradigm

From the perspective of the medical staff I was holding a neonate who was displaying some of the 50 signs and symptoms suggestive of Trisomy 21. Of Down syndrome.

I too could see them as I remembered bits and pieces from my 1970s nursing text, Whaley and Wong. Remembered a list that now seems so de-personalised, so harsh and objectifying.

• Flat face
• Small head
• Flat bridge of the nose
• Smaller than normal, low-set nose
• Small mouth, causing the tongue to stick out and look unusually large
• Upward slanting eyes
• Extra folds of skin at the inside corner of each eye
• Rounded cheeks
• Small, misshapen ears
• Small, wide hands
• A deep crease across the centre of each palm
• A malformed fifth finger
• A wide space between the big and second toes
• Unusual creases on the soles of the feet
• Overly-flexible joints (as in people who are double-jointed)
• Shorter than normal height
   
  

Christopher and I awaited the arrival of the paediatrician without the benefits of privacy, only able to guess at what the other was thinking. We only had the briefest of moments alone when they transferred me to my room and Christopher was able to tell me that the staff thought our son had what I had blurted out.

I remember being totally devastated and searching his face, trying to gauge how he felt. But there was no time for us to talk because as soon as he had uttered the words ‘Down syndrome’ the paediatrician entered the room and it was immediately apparent he perceived our birth outcome a disaster. “You’re both professionals,” he said. “You both know what we are thinking.” But he couldn’t bring himself to say the words, say ‘Down syndrome’, and instead went on about the need for chromosomal testing and the likelihood of a positive result.

The gist, the message about our son was that while he would walk, might even talk, he would never cook, never understand danger and never live independently, never, never, never....

Fraser was only an hour or so old and he’d already been judged, already been found wanting.

Creating Fraser’s cultural identity

The staff wanted me to accept his diagnosis and prognosis. I, on the other hand, wanted to de-medicalise the way in which his existence was being shaped. I didn’t want to know right then and there about the disability services to which I would be entitled, the possible medical complications I might face. And in a small attempt to create a different kind of space, a social space that could afford my son an identity that wasn’t focused on his genetic make-up, I requested it not be assumed by the staff that he had Down syndrome until the results of the blood tests were known―knowing full well they wouldn’t be available until after I’d left hospital.

Over the next few days Fraser had to spend some time in the neonatal intensive care unit because of an unrelated medical problem. His initial redness turning out to be a symptom of polycythemia (too many red blood cells). And in many ways this helped me to become his mother―to concentrate on looking after him in the same way you would any sick baby.

Yet while I was deeply confident, I was also deeply ashamed. Deeply ashamed I had given birth to a baby with a flaw, a defect. And processing the emotions was made doubly difficult because I felt many people thought I should have had prenatal testing―that it was my choice to have Fraser and therefore my fault, my problem.

Fortunately, however, these feelings of dejection were equally matched by a passionate belief he belonged in our family, and that if he could belong and be included in our lives then there was no reason why he couldn’t be included in the lives of others.

How prenatal testing shapes our lives

It is now twelve years since I gave birth to Fraser; yet even today, talking about our lives can still mean having to talk about the test―having to explain why I didn’t agree to an amniocentesis. Usually this is fairly straightforward, and fairly painless, but not always. Women have and still do openly challenge my decision. Why didn’t I take control? Aren’t I a feminist? What sort of a message do I think I am sending to younger women?

Initially, I wasn’t able to fathom how anyone could perceive the issue as being so simple―take test, no Down syndrome. And it wasn’t until I saw the film Gattaca in 1997 that I began to understand how it could seem such a straightforward issue. Gattaca explores a world in which genetic discrimination has been taken to its logical conclusion―a world in which babies are screened at birth and labelled as either ‘valids’ or ‘in-valids’, according to their DNA status.

Valids have every opportunity open to them while in-valids can only do menial work. It is a culture in which pre-implantation screening and prenatal testing are considered givens. Essential. And to challenge such discrimination foolish. However, in the film the main character, Vincent, does just that and despite his in-valid status and its inherent obstacles, he achieves his dream of becoming an astronaut.

The film is essentially a thriller―Vincent at all times at risk of his true DNA status being revealed. The fear and loathing of imperfection is palpable.

For me the tone of the film was a revelation and for the first time I could see my decision through the eyes of others. Feel the shock and horror of what must appear an irrational and irresponsible decision. Understand how, if I am not either religious or anti-abortion, my objection must seem all the more strange.

The film made it clear to me that if you don’t question the ‘genes as destiny’ paradigm, the ‘disability as suffering’ paradigm, then you probably won’t think to question the ‘prenatal tests are routine and essential’ paradigm. That you will simply accept the conventional medical wisdom―that certain genetic configurations are not only avoidable, but best avoided.

Paradoxically, this understanding has made mothering Fraser, including Fraser, easier and more enjoyable. Because I understand the grounds on which he was to have been excluded and how out of tune I am with the conventional thinking surrounding pregnancy and disability―I am so much freer to mother and to feel proud of my son.

I would like to share with you what Fraser can do.

He can

· Get dressed (as long as the clothes are already      turned the right side out and have no buttons!)
· Understand most of what Mum and Dad say
· Play with his brothers on the computer
· Make a cup of coffee for Mum
· Fasten his own seatbelt
· Wait in the car line with his brothers
· Swim in the surf and catch waves on his boogie board
· Compete in the school swimming carnival
· Draw for hours at a time.
 

More about Fraser

Fraser is the first child with Down syndrome to attend his school.
He loves The Simpsons, Futurama and Star Wars.
He begs Mum or Dad to take him to the DVD store on the weekends.
He loves sausages, Coke and salmon risotto.
He enjoys life.
He’s always in the ‘now’.
His brothers are Aidan and Harrison.

What excites me today as a mother

I love that there is now hope. That there is not just hope of a new test, a reliable non-invasive prenatal test, but hope regarding novel treatments―of medications that may assist children with Down syndrome with speech and memory. And an increasingly vocal minority who want to talk about how including children in mainstream schools enhances their development, how children with Down syndrome can, can can....

That perhaps, in the not too distant future, there will be a change in the way Down syndrome is perceived; that if Fraser can―if our family can, then perhaps mothering a child with Down syndrome will be considered culturally acceptable.
That the nexus between genetics and destiny will be weakened in the sense of needing to choose one foetus over another, but strengthened by using genetic understandings to enhance and assist the lives of all individuals no matter what their genetic make-up.

And perhaps one day Down syndrome will be considered a condition with which you can conceive. Can imagine. Can live. And not an experience to be avoided at all costs.

Copyright © Fiona Place 2008

It is with grateful thanks to the author that we have permission to publish this article.

First Published M/C Journal, Vol. 11, No. 3 (2008) - 'able'