media reports
- 2000
Selected newspaper article reprints about people of short stature, including SSPA
members, as well as short stature in general from newspapers and magazines
around Australia from 2000.
For articles from around the world about people of short stature and short
stature in general, go to
http://www.shortsupport.org/cgi-bin/news_list.cgi
2000
Headlines
Sisters' plea for help
Leader-Cranbourne Sun (Victoria, Australia), 19 January 2000, p.
14.
SARAH
Whitaker is 13 years old and has never been able to walk down to the corner
store near her Cranbourne North house.
Sarah, and her 10-year-old sister Chloe, have two different conditions that
combine to severely restrict their mobility.
The conditions are known as achondroplasia and pseudo achondroplasia. Both are
types of dwarfism. A combination of the two is extremely rare. Sarah and Chloe's
younger brother, Tim, and sister, Georgia, each have one of the conditions. The
children have been living with their parents, Jim and Leisa, in the Cranbourne
North house until a custom-built house is erected for them nearby. Everyday
tasks such as using stairs, sitting on a normal-sized chair and turning on a
light switch will be made much easier at the new house.
But the children remain at a disadvantage when they return to school. Leisa
Whitaker said Sarah can only walk a distance of about 20m before it becomes too
painful and exhausting.
So the family is trying to raise money for two $1900 scooters for Sarah and
Chloe from the United States, which will allow easier mobility around school and
home.
``It will just make life a lot easier for them. At the moment if we go out
anywhere they have to be put in strollers and as you can imagine that's quite
embarrassing for a 13-year-old,'' Mrs Whitaker said.
Dwarfism not the end
of the world - SSPA.
Australian Associated Press (Australia), 3 July 2000.
SYDNEY, July 3,
AAP - Dwarfism was not the end of the world, the Short-Statured People of
Australia (SSPA) said today.
SSPA spokeswoman Megan Lilly said she would be concerned if foetuses were being
terminated simply because they suffered dwarfism.
It follows the termination of an eight-month-old foetus, diagnosed with
dwarfism, in Melbourne's Royal Women's Hospital.
The hospital has since suspended three senior medical staff and asked the
Victorian coroner to investigate the abortion, carried out on the 40-year-old
woman who became suicidal after learning the diagnosis.
"I think we have to have a lot of compassion in this situation," Ms Lilly said.
"We don't know the full details either.
"There is a fairly significant degree of concern where there is a non-life
threatening disability that the termination was performed at that late stage of
pregnancy.
"There are many, many short-statured people who have gone on to have very long,
fulfilling, totally normal and fantastic lives.
"Dwarfism does not need to be an impediment."
Ms Lilly said there were 2,000 short-statured people in Australia, and some 300
different forms of the genetic disability.
She said there was considerable support for people suffering dwarfism, both in
terms medical help and support.
"The only disadvantage that short statured people suffer is a lack of reach and
other people's attitudes."
Ms Lilly, who has a short-statured daughter, Samantha 11, said she did not know
about her daughter's condition until after her birth.
But it would have made no difference in her decision to keep the baby, she said.
Meanwhile, Australia's first short-statured couple to give birth to two children
without the achondroplasia gene said they didn't care what size their babies
were.
Michael and Debra Connors are the parents of Ben, three, and Nathan, six-weeks.
"Its never mattered whether the children were short-statured or not," Mr Connors
told Woman's Day in an article published today.
"All we've ever worried about is them being healthy."
"I don't see my children of being any particular size, they are just my
children."
Ms Connors would not comment when contacted today.
Whose life is it anyway?
The Age (Victoria, Australia), 8 July, 2000, p. 3.
Authors: Mary-Anne Toy and Caroline Milburn
MARILYN LYNCH has never seen her son,
Oliver, cry. Except once, many years ago, when her other child, Christopher,
made him weep. It was a brotherly scrap, long forgotten.
Lynch tells the story proudly in the living room of her neat weatherboard home.
It has been a week of distress. What upset Lynch, and other families with short-statured
children, was a headline in Tuesday's Age: "Doctors endorse dwarf abortion". The
headline topped an article reporting a survey that found 78per cent of
obstetricians supported early termination of a foetus with dwarfism. The survey
followed a decision by the Royal Women's Hospital to suspend three staff and
call in the coroner after a late-term abortion of a 32-week-old foetus. The
woman was said to be suicidal after learning her child would have dwarfism.
Lynch is secretary of the Victorian branch of the support group Short-Statured
People of Australia. After the article was published, her phone rang
incessantly. Some callers were in tears; they felt hurt and threatened by the
survey. One caller didn't have a short-statured child, but rang to say she was
saddened that height was being used to judge the worth of a human life.
Ravi Savarirayan, a clinical geneticist who treats Oliver, had more than 20
calls from distressed patients, all short-statured people, many saying they were
afraid or ashamed to go outside because "they felt that society didn't want them
to be around". As one patient walked down the street, a man yelled from a car:
"You should have been aborted." A pregnant woman, six weeks away from giving
birth to a child with dwarfism, phoned Lynch and calmly asked for information
about the disability and any advice Lynch could give.
Lynch says the best advice she received after giving birth to Oliver in a small
country hospital in Scotland was to take him home and love him. "That's exactly
what we did," she says. "Once that bonding takes place, it would take heaven and
earth to take that relationship away or spoil it."
The survey that upset Lynch showed that doctors' support for terminating a
foetus with dwarfism dropped dramatically when the foetus was 24 weeks old. But
the survey raised two questions. One is old, but is made more pressing by
advances in science: who decides what kind of human beings are to be born? The
other, also driven by science, is whether inherited and foetal disability can be
eliminated. That, naturally, leads to another. Should disability be eliminated?
Twenty years ago, when Lynch was pregnant with Oliver, ultrasound scans were
unable to detect the foetal abnormality, known as achondroplasia, a restricted
growth that causes shortening of the limbs. Oliver's condition was diagnosed two
days after his birth.
Would Lynch have considered an abortion had she known of Oliver's condition?
It's an unfair question, she says. She is relieved that science had not then
advanced to the point of forcing her to choose. "We didn't have to make that
decision, and I'm glad." But prenatal testing is now common and likely to
increase. Science allows women to find out, at varying stages of pregnancy,
whether a foetus has an abnormality such as Down syndrome or cystic fibrosis. In
Victoria, in 1998, there were 269 terminations of foetuses with major
abnormalities. A quarter of these were Down syndrome, the most common cause of
intellectual disability. There were also 61 late terminations (after 20 weeks)
for foetal abnormality.
Today, an ultrasound at 18 to 20 weeks can identify gross physical abnormalties
such as missing limbs, cleft lip or heart defects, but still not all physical or
mental defects. Where there is a family history of disease, there are more than
30 tests that will identify single-gene disorders such as thalassaemia, cystic
fibrosis, Duchenne muscular dystrophy and haemophilia.
This, along with improved diet for mothers and better medical care, is why the
number of disabled children being born is declining, says Professor Bob
Williamson, director of the Murdoch Childrens Research Institute. Twenty to 30
years ago there were no prenatal tests, and abortion was risky. Until recently
many disabled children also died in early childhood. Medical advances have
created the ethical dilemma, says Williamson, "because nature's way is for these
diseases to be fatal".
Every year science pushes the point of detecting abnormalities earlier and
earlier into pregnancy. The Human Genome Project will allow scientists to
identify all the estimated 100,000 genes and to work out what they do. This will
lead to more prenatal tests, more advances in treatment, and more moral
dilemmas.
In 1998, Britain's Royal College of Obstetricians and Gynaecologists documented
a case involving the termination of a 28-week-old foetus with dwarfism. The
mother also had the condition. In a rare exception, the college, moved by the
woman's life story and her description of the misery that her stature had caused
her, eventually endorsed the abortion.
But this is a rare case. Parents honest enough to admit they could not cope with
the demands of a disabled child elicit sympathy from Raimond Gaita, professor of
philosophy at the Australian Catholic University and the University of London.
But he thinks that those who abort an abnormal foetus thinking they are saving
the child from a miserable life are generally sanctimonious and always
presumptious.
Gaita says it is impossible to predict what another person's attitude will be to
their own suffering. "There are plenty of people with disabilities who think
that life is a gift. It's always good to be born. If a person finds it's not
good then that person has the option of killing themselves. People may think
that sounds cruel, but it's better than making that choice for them."
Gaita tells the story of a friend with muscular dystrophy who graduated from
university to become a philosopher. He often became upset after watching
documentaries about science's inexorable march towards human perfection. "My
friend used to say, `They're talking about my life as though it is worthless'.
How many of us would still be alive if we had to prove... how much use we would
be to the world if we were born?" Gaita feels that the signposts of a civilised
society, core values such as unconditional parental love and acceptance of
difference, are in danger of being undermined if it becomes accepted that
parents should abort abnormal foetuses.
Ros Allen, president of the Down Syndrome Association of Victoria, supports a
parent's right to choose, but worries that some doctors have overly negative
attitudes about the future lives of foetuses with non-life-threatening
disabilities. She thinks that parents, stunned by the news that their unborn
child has Down syndrome, are sometimes given inadequate advice by doctors.
"Doctors... feed people with negative images instead of saying where to get
up-to-date information." Lack of access to support groups is particularly acute
for some ethnic families in which having a disabled child is seen by the husband
as the woman's fault.
Allen's 18-year-old son, Edward, has Down syndrome. He enjoys going to the gym,
the local school, the video shop. Allen says that the past 20 years have seen a
revolution in attitudes to the disabled, from which Edward has benefited. But
she fears that as people move towards demanding greater human perfection, the
disabled might again be shunned.
"As a parent, I think we've become more selfish, in wanting to have everything
right... We have a living, loving child. I would never want to take away those
18 years. They've been frustrating, but they've also been rewarding." Phil Grano,
coordinator of Vilamanta Legal Service, a community-based agency representing
the disabled, says that if disabled children become rare, the world will be a
less tolerant place - especially if their rarity encouraged a culture of blame
against those who receive disability pensions or state support to care for
disabled children.
"People with disabilities create a connection between people," Grano says. "They
shatter our small horizons. They open us up to intangible experiences of
community. They draw acceptance from us because they are just who they are,
without pretence. The nature of day-to-day life for people with disabilities is
hard, but I haven't met many who do not want to live. They are tenacious about
life."
Still, the choices parents may now have are agonising, as Professor John Wilson,
head of the cystic fibrosis service at the Alfred Hospital, has seen. Every year
about 20 children born in Victoria have cystic fibrosis. Although life
expectancy for these babies can now stretch into their mid-50s, they will face
many problems.
Wilson says that if he was counselling a woman carrying a foetus with the
abnormality that causes cystic fibrosis, he would tell her the child will
develop bronchitis and, as a teenager, will get frequent lung infections,
probably be malnourished because of poor pancreatic functions and require enzyme
replacement capsules throughout life.
As a young adult, lung problems will put the sufferer behind peers in physical
activity. Work and study may be interrupted by hospital stays for lung
infections. At 30, the sufferer will find that many friends with cystic fibrosis
will have died, the luckier ones will have had a lung transplant.
Wilson says: "We're left with a difficult ethical question: is it better to have
lived rather than not to have lived? Most families who elect to terminate will
have another pregnancy." However, he says research into the disease is moving
forward rapidly. One day there may even be a cure. "So why are we terminating
these pregnancies if there's a cure around the corner?"
Yet terminations for foetal abnormality are few compared with the 20,000
abortions performed in Victoria each year for social reasons. And Dr Jane
Halliday, an epidemiologist, says research she has completed for the Murdoch
Institute shows that as many as 40 per cent of women with increased risk of
carrying abnormal foetuses (mainly women aged 37 or older) are choosing not to
be tested. Their reasons range from concerns about the safety of the foetus to
religious and cultural convictions, which mean termination is not an option.
About 4per cent of the 62,000 births in Victoria in 1998 - 2462 infants - were
born with congenital abnormalities. There is no data on how many of those
pregnant women knew their foetus was abnormal.
MARILYN LYNCH has no regrets about her life. "I'm very proud of Oliver and
Christopher. I don't differentiate between the two of them. (Oliver's condition)
has made me a lot stronger. You adjust to other people's attitudes, you make
allowances for ignorance, you try your best to promote the positive side because
that's the only way to help your children.
"Anyone who has a child who is different in any way has to deal with the
emotional side of it, the imagination of how life might have been, a feeling of
loss of the child you thought you might have and who didn't materialise."
Doctors told Lynch that Oliver could lead a full, active life, and the
prediction proved accurate. Although school sports days were spent with
Christopher racing to the finishing line and Oliver watching from the sidelines,
the older brother never felt undervalued.
"I would always put my hand up to help organise the event," says Oliver, who
will celebrate his 21st birthday soon. "By the time I realised my friends were
faster and taller than I was I had accepted who I was. I knew I was different
from everybody else and it was up to me to make the most of who I am."
After the family emigrated to Australia, Oliver finished high school and works
as a medical research assistant at the Austin Hospital. But some things don't
change. Strangers ask Oliver how old he is, children make cruel remarks. That
enrages Christopher, 17. When the two brothers walk along the street, he is
fiercely protective of his older sibling. "It's the adults who stare,"
Christopher says. "They don't have the guts to say anything... If anyone uses
the word dwarf or midget, I'll always jump on them and say, `Short statured'.
People are so rude."
Oliver has his own way of coping. "Every comment and stare I get makes me a
little bit tougher. There's no hiding place for me when I go out. But when I get
those comments I know that for every one I get, there are many more people
behind me, supporting me."
Scientists find dwarfism gene
Herald Sun (Melbourne, Australia)-September 19, 2000, p. 49.
BETTER
understanding of what causes dwarfism is helping people with the condition raise
healthy families.
Clinical geneticist with Victorian Clinical Genetic Services Ravi Savarirayan
said scientists had found the gene responsible for achondroplasia, the most
common form of dwarfism.
He said the gene was vital in cartilage development. ``We know what goes wrong .
. . the next step is to work out what the protein is doing and how the error is
caused,'' Dr Savarirayan said. ``Increased understanding of the
mechanisms that cause various forms of short stature and dwarfism is going to
lead to an increased ability for families to pursue pre-natal diagnosis for
reasons of reproductive choice.''
Dr Savarirayan will discuss genetic issues at the Short Statured People's
Association of Australia annual convention this week at Blampied, near
Daylesford.
He said while there was no cure for the condition, improved knowledge was
leading to better management through improved orthopedic therapies.
Dr Savarirayan said where both partners were of short stature, there was a 25
per cent chance the child would grow to average height, and a 50 per cent chance
the infant would also be of short stature.
For details about the conference, call the association secretary on 9388 9709.
Getting around a rare illness
Whittlesea Post (Victoria, Australia)-October 4, 2000, p. 9.
BOTH Khalil Moussa 17, and his 14-year-old sister Vicki have Cockayne
syndrome, a rare condition that usually affects only one in four children of
families diagnosed with it.
There are three children in the Moussa family and only George, 19, does not have
Cockayne's.
Mrs Moussa said there were a lot of doctors who did not know what her children
had and until six years ago Vicki and Khalil could not put a name to their
condition.
``Because it is so rare it was hard for doctors to identify it,'' she said.
``There is not a lot known about it.''
The diagnosis was made more difficult because only three families in Australia
have Cockayne syndrome and there are less than 100 diagnosed cases in the world.
The condition is characterised by dwarfism and mental retardation and sufferers
usually die from respiratory-related problems before they reach the age of 30.
The basic cause of Cockayne syndrome is unknown and it is not yet possible to
identify carriers of the recessive trait.
``I hope that more information is learnt about the condition for other families.
``I think it is different for all sufferers," Mrs Moussa said.
But their condition does not stop Khalil and Vicki from enjoying themselves.
They both love school and Vicki said she was happy the holidays were nearly
over.
``I've got a bike at school. I like going there,'' she said.
Because their mobility is limited both Khalil and Vicki rely on help for a lot
of the activities most people take for granted.
But recently they came to their mothers' aid and showed their determination to
be independent.
``I bowled around the corner of the garage and went straight into the veranda
blind,'' Mrs Moussa said.
``I was knocked out for about half an hour and the kids crawled out of the car
and came to find me.
``I was so proud of them to come and try and help me.
``They were kissing me and stroking my face until I woke up. They saved me you
know.''
Khalil and Vicki are both in wheelchairs and also use walking frames so getting
from the car to the front of the house was no mean feat.
Mrs Moussa said they were both really good at using the chairs but getting them
around was difficult.
``It's a big operation to go anywhere. We've got all-day bags, wheelchairs,
walking frames and lots of extras,'' she said.
``I need a van with special lifts for the chairs and room for all the gear.
They're pretty expensive vehicles though. I need $8000 more.''
Surgery bid to grow 10cm
Herald Sun (Melbourne, Australia)-November 20, 2000, p. 2.
Author: Jen Kelly, Health reporter
A SHORT Victorian man from a tall family is being
considered for leg-lengthening surgery to make him 10cm taller.
A surgeon is assessing the man and warning him of the risks before the operation
proceeds at St Vincent's Hospital.
Two other men who wanted to have their legs stretched have been knocked back by
another surgeon who deemed the procedure too risky.
The operation is similar to one that lengthened the legs of a 16-year-old
British girl by 12.7cm because she wants to be a flight attendant.
The bones are broken and the legs gradually stretched. New bone grows to fill
the gaps.
The Victorian man, who has not been identified, is in his early 20s and about
143cm tall.
He has short legs and arms in proportion to his trunk because of a bone
condition called achondroplasia.
Leg lengthening is regularly done in Australia for patients with one longer than
another, such as after an industrial or road accident, or in children with bone
deformities.
The man's surgeon, Leo Donnan, said he knew of no other Australian case of
someone having the operation just because they thought they were too short.
``It's not just cosmetic, it's functional as well,'' said Mr Donnan, from the
Royal Children's Hospital's limb reconstruction and lengthening unit.
``He is a short man in a very tall family and with tall friends.''
He said the man believed he needed to be taller to succeed in his family's
textiles and concreting businesses.
Prahran orthopaedic surgeon Elton Edwards has revealed that he twice refused to
lengthen the legs of men who wanted to be made taller.
A university student in his early 20s, who was about 150cm tall, asked for the
operation last year because he wanted to be a business high-flyer.
``He felt that if he was wheeling and dealing in the business world, that his
short stature would make it difficult,'' said Mr Edwards, who said he had
performed the operation more often than any other Victorian surgeon.
But the student and another man who approached Mr Edwards were refused.
``They were both about five foot (152cm) and they simply wanted to be taller,''
Mr Edwards said.
``There are too many complications to warrant that sort of procedure.''
Any comments or suggestions should be forwarded
to: francisjk@bigpond.com
Copyright: ©2000 Short Statured People of Australia Inc. All rights reserved.
Last updated:
16 January, 2012