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Living with Down Syndrome in the 21st Century
By Jan Gothard, Janet Blagg
Fremantle PressCopyright © 2010 Jan Gothard
All rights reserved.
'THE BABY I' D DREAMED OF HAVING'
'I remember one of the nurses coming in and saying, "Well you're lucky she wasn't born thirty years ago, because she would have been put away and what have you. She'll go to school and she'll learn to read." I was lying there thinking, yes, but she was going to be a brain surgeon.'
In 1990, two years before my daughter Madeleine was born, Fay Weldon's book Darcy's Utopia was published.
I think about my friend Erin as I often do. She has a Down's syndrome baby. We all knew it would be disastrous; we foretold that her husband would walk out, that her other children would suffer: we saw she was the only one of the family unit who couldn't bear not to see the fruit of her womb, however sour, ripen, drop and live. And that's how it turned out: the child, now twelve, is badly retarded. Erin is no more than its nurse; she manages without a husband, her other children are spiteful and embarrassed. Erin talks about the joy the mindless child brings her — well, so it may, but her love for it has been most destructive for others. Left to us, friends and family, we would have said no, Erin, sorry, not for you. This baby you insist on having keeps other babies out, ones which won't cause this distress to you and yours. Just not this one; Erin, try again.
Images of the person with Down syndrome, mostly unattractive, have always been present in our literature. Benjamin Compson, Faulkner's shuffling idiot narrator in The Sound and the Fury, is based on a character with Down syndrome, and it's not hard to find similar examples — the sad-eyed Mongol in Take Me to Paris Johnny and the 'retarded Mongol brother' with the mismatched ears in The Jane Austen Book Club are just two. As every parent of a child with Down syndrome is told though, 'Of course, things are so much better now!' The Memory Keeper's Daughter, an enormously popular recent novel which focuses on a baby with Down syndrome relinquished at birth, is light years away from Darcy's Utopia.
Today, for those who look, there are many positive depictions of people with Down syndrome in circulation in Australia: television programs such as the memorable SBS series House Gang, for example, which featured a group house occupied by people with intellectual disabilities, and the US TV series Life Goes On, starring Chris Burke. Pascal Duquenne was the Cannes award-winning star of the 1996 Belgian movie The Eighth Day and in 2009, the Spanish actor with Down syndrome Pablo Pineda was awarded the prize for best actor for his role in the movie Me Too. In the United Kingdom the fabulous 'docu-soap' The Specials, filmed in a household of young people with disabilities including Down syndrome, is great viewing.
Like the concurrent process of 'mainstreaming' Indigenous and ethnic Australians in the media, people with disabilities such as Down syndrome are starting to become more visible as pleasant, even popular incidental characters in mainstream productions. The former Australian television series GP featured the engaging Tracie Sammut as a regular cast member; EastEnders now features a baby with Down syndrome, and Australian actor Danny Alsabbagh appeared as Toby in the recent ABC TV series Summer Heights High. People with Down syndrome have appeared in Target catalogues and in advertising for ABC TV. In 2009 the short film Be My Brother, about a young man with Down syndrome, carried off first prize at Tropfest in Sydney for director Genevieve Clay while the lead actor Gerard O'Dwyer (who has Down syndrome) won the award for best actor.
Clearly, disability is now viewed more positively than was the case just a generation ago. Yet the birth of a child with Down syndrome still causes immense grief and untold anxiety for the family involved. The US term 'retard' has replaced the term 'spaz' (a favourite when I was a teenager) as a contemporary term of abuse among younger people. In Australia in May 2008, the Seven network's television series All Saints featured a young couple — brother and sister — who were expecting a child, and who were told that because the relationship was incestuous, the baby would have Down syndrome. The continuing currency of these sorts of images and this type of extraordinary misinformation makes a family's immediate response to the news that their child has Down syndrome and an intellectual disability at best ambivalent.
Tied up with the anticipated arrival of a baby is the expectation that the child will bring joy and happiness to the parents. Implicitly, a child is often seen as an extension of one's family, a link with both past and future. Most parents, particularly during their first experience of parenthood, marvel at the perfection which is their new child, and there can be few who have not harboured secret dreams and expectations. If we don't necessarily yearn to parent prime ministers and brain surgeons, most of us hope at the very least for the health, happiness and, ultimately, future independence of our offspring. At first glance, the birth of a child with Down syndrome seems to dash each one of these aspirations.
In not so distant days, the diagnosis of Down syndrome was so awful that parents were told to abandon all hope for a normal life with or for that child and to pass their Mongol baby straight into the hands of an institution. The legacy of that process of systematic abandonment is still with us today. If Down syndrome is a condition we can test for and screen against; if carrying a baby with Down syndrome is unquestioned grounds for termination; if bringing up a child with Down syndrome was once considered so dreadful a fate that people 'put their child away' instead, then the message is very clear: such a child is something to guard against, not to welcome. What kind of future are we opting for if we accept this child into our home? It is this question in all its starkness which parents have to confront when they learn the news about their newborn child.
Almost all parents of a child with Down syndrome remember the birth and the subsequent diagnosis in extraordinary detail as one of life's most profound watershed moments. The memories are fixed, a mental video to be painfully replayed over and over again. First- time parent Britt Canning's son Jack was born in 1995 at a hospital in Perth's northern suburbs. Britt described receiving the news as 'a huge shock, probably the biggest shock I have ever had and maybe ever will have, touch wood.' She and her husband were left 'quite shattered, absolutely devastated.'
Looking back now, it was kind of bitter-sweet, it was both the worst and the best day of my life. It was quite a textbook labour, nine hours and no problems; he was born normally, naturally. He was a big baby too, a good size. I just remember once he was born I was in heaven, I was totally ecstatic. He breastfed straight away, he got an eight and then a nine in the APGAR test and he was obviously just thriving.
At about nine o'clock, the paediatrician came in to see me. Jack was lying in a bassinet at the time, I was sitting on the side of the bed feeling great, feeling really good. The paediatrician picked Jack up and put him in my arms and then he said to me, 'Have you heard of a condition called Down syndrome?' and my world just fell apart, just like that, those words. We were just absolutely shocked. I was holding Jack but I felt numb, completely numb. Now I wonder if it was such a good idea to give him to me, it is amazing I didn't actually drop him on the spot.
Luke Middleton recalled similar sensations.
I felt absolutely devastated. I remember going outside and sitting on a park bench at the front of the hospital and everything seemed black and dark. I remember thinking that this was a terrible tragedy, a really terrible tragedy, and that all my wishes had collapsed.
Shock, horror and outrage went hand in hand with feelings of numbness, denial and total disbelief, all underpinned by a profound sense of sorrow and loss: loss of the perfect child whose arrival had been so eagerly anticipated, and loss of a way of life that had been taken for granted. Talking of this moment, people spoke in terms of their world falling apart, the end of life as they knew it; of devastation, anguish and mourning. For many parents, the death of their newborn child could scarcely have been worse and, initially at least, one of the most common sensations was of bereavement.
Recognition by medical staff that a child has Down syndrome is usually almost immediate. The condition is marked by a cluster of certain features which together constitute the 'syndrome' identified by John Langdon Down in 1866. While most of the public can identify people with Down syndrome from the distinctive appearance of their eyes, not all people with Down syndrome share this feature to the same extent, and this is not the feature medical staff rely on for immediate identification. The classical features (or 'stigmata', the technical term) of Down syndrome are visible in the face, neck, feet and hands. The eyes may appear to tilt upwards and be almond-shaped, a fact which led to earlier naming of the syndrome as 'Mongolism', as this feature was viewed as typically 'Asiatic'. The irises, particularly in fair children, sometimes exhibit rather attractive light flecks called 'Brushfield spots'. In some children, the tongue can protrude a little, and the mouth and its cavity may be smaller than normal. Ears too are sometimes smaller and the tips slightly folded over. A child's face sometimes appears flatter, especially the bridge of the nose, and the head smaller. Some children with Down syndrome have a characteristic transverse palmar or 'simian' crease, a single line crossing the palm of the hand instead of two; others have an inward curved little finger. Sometimes a wide gap exists between the first and the second toe.
Low muscle tone (hypotonia), which gives the newborn child with Down syndrome its characteristic floppiness, is generally one of the first signs alerting medical staff to the presence of the condition. Some of the 'stigmata', particularly the smaller facial features, have medical implications, but hypotonia is the most significant as it can impact on the rate of a child's physical development. For that reason, while Down syndrome is typically thought of as an intellectual disability, it is also accompanied by delayed physical development in macro areas such as standing and walking, and in micro skills such as grasping and picking up objects. Low facial and oral muscle tone, often responsible for a protruding tongue, can also compromise or delay the child's ability to take solid food or to speak clearly.
As most recent books on Down syndrome are quick to point out, there is no correlation between the number of characteristic physical features a person with Down syndrome has, and their intellectual capacity. While that may be comforting later on, the knowledge that one has a child who can be identified as 'different' from the moment of birth is not.
Once the visible physical features have been noted, a medical practitioner will usually inform the family that Down syndrome is suspected, and that this can only be confirmed by a blood test. Usually the child and both parents are tested, to confirm the clinical diagnosis and to determine whether, as occurs in a very few cases, either of the parents is a 'carrier'. But generally the blood test will not answer the pressing question — why us? Apart from the knowledge that the incidence of Down syndrome does increase with maternal age, there is still no explanation for its occurrence.
A blood test, or cytogenetics report, clarifies the type of Down syndrome which the child has. Ninety-five per cent of cases occur in the form of trisomy 21, in which every 21st chromosome forms in triplicate instead of the usual twin form. Trisomy 21 has no apparent genetic implications. It is not 'carried' or passed from one generation to the next, and to date there is no explanation for this aberrant chromosomal formation. We do know that it occurs naturally in all cultures, though the rate varies according to the age profile of childbearing women. In Western Australia, Down syndrome occurs in about one in 445 pregnancies.
Down syndrome also occurs in two other forms: mosaic and translocation. Mosaicism occurs when not all of the body's cells are trisomic: some cells are normal and some have a third 21st chromosome, distributed in a random or 'mosaic' fashion. This condition has been described as 'incomplete' or 'partial' Down syndrome, and occurs in about four per cent of the population with Down syndrome. The condition is the subject of some research and debate because the extent and impact of the disability may be less than for other forms of Down syndrome. Swimmers with mosaic Down syndrome, for example, compete for records in a separate category from swimmers with trisomy 21 as their performances are not always comparable. Sometimes too the condition may take longer to be identified, as was the case with Graham King in Geraldton whose mosaic Down syndrome was not diagnosed until he was five years old.
Translocation Down syndrome, the least common form of all, is a condition where the extra 21st chromosome is not attached to the twin 21st chromosomes, but to another chromosome. This seems to be of no additional significance for the child, whose development and appearance will be 'typical' of children with trisomy 21, but it can sometimes have implication for the parents, as this form of Down syndrome may occur where one of the parents themselves has some translocated genetic material. This is not always the case however, as Trish Weston was well aware.
Will has translocation Down syndrome, and it caused us massive angst waiting for our chromosome tests, to see which one of us was a carrier (the paediatrician had said one of us 'must be'). Will was the first grandchild on both sides and the implications for our siblings and their future children also seemed to be in the balance. It turned out that neither of us was a carrier.
The few days between initial diagnosis and confirmation by blood test are often days of great anxiety and roller-coaster emotions. These days, doctors tend to communicate their belief that the child has Down syndrome soon after the clinical examination, although this may also vary according to hospital policy or the doctor's inclination. When Catherine Slater's daughter Karen was born in May 1979, the London hospital where she was born had a policy of delaying passing on the news.
If there was anything wrong, they wouldn't tell you for five days, for fear the mother might reject the baby. So everyone knew, but no one was telling me. I had absolutely no idea. I noticed nothing different from my first daughter; all you knew in those days about Down's syndrome was photos of people with pudding-bowl haircuts.
When the news finally did come,
It was terrible. We'd had all the congratulatory cards from our friends and our family and everything. I couldn't ring anyone to tell them. I just couldn't.
More recently in Perth, one family was denied knowledge of the clinical diagnosis even though trisomy 21 had been mentioned in the hospital case notes. The family was already very familiar with the condition as it had three adopted members with Down syndrome.
The doctors hadn't told them what their suspicions were. They were simply saying, we need to do some tests and Robert had read the file and because of our family, as soon as he saw trisomy 21 he thought, hang on, I know what that is. It was probably a week before the doctors in the hospital were prepared to even suggest that this child might have Down syndrome. They were just playing the game, 'We have to wait till this blood test comes back.' (Helen Golding)
Certainly, once they have informed the parents, doctors generally play down any possibility that their initial diagnosis might prove incorrect. Our doctor, for example, pointed out that if our daughter didn't have Down syndrome, she clearly had something else 'wrong' with her. Nonetheless, parents invariably hope against hope that there has been a mistake. Yet it is generally the initial news of the possibility of Down syndrome rather than confirmation by blood test which is remembered most clearly and most shockingly as the moment when the world fell apart.
What is the best way to break such news? Most parents felt that they should have been informed as soon as there was any diagnosis made by medical staff. But often it was the way in which the news was conveyed as much as the timing which compounded the distress, as was the case after Karen Langley and Paolo da Silva's daughter was born.
The paediatrician arrived and examined Shannon and then said, 'There is a heart murmur, but I don't know how serious it is at this stage.' And then he said, 'But I have to tell you I have concerns about your baby. I think this may be a Downs baby.' We were on the hospital bed and I think the main midwife from the Birthing Centre was there as well, and probably the others were all hovering in the background. Paolo said something like, 'What are you saying? Does she, or doesn't she?' Because the way he'd put it suggested that she might have; and then he said something which confirmed it. At that point, Paolo burst into tears.
Excerpted from Greater Expectations by Jan Gothard, Janet Blagg. Copyright © 2010 Jan Gothard. Excerpted by permission of Fremantle Press.
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Table of Contents
1: 'THE BABY I' D DREAMED OF HAVING',
2: MAKING CHOICES,
3: 'IT' S NOT A DISEASE, YOU KNOW!': DOWN SYNDROME AND MEDICAL ISSUES,
4: GIVING HOPE A HELPING HAND,
5: LEARNING TO BE NORMAL, LEARNING TO BE DISABLED,
6: SCHOOL'S OUT: THE RIGHT AND RITES OF PASSAGE,
7: 'WE'VE GOT TO OUTLIVE HIM!',
8: 'A DIFFERENT WAY OF LOOKING',