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By Teresa
Borden
Staff reporter
Having a child who has the flu all the time can be difficult for
a parent.
Now try having a child who has a condition 24 hours a day, seven
days a week for the rest of their life.
Alex and Amanda Steadman from Beaverbank, Nova Scotia are living
this nightmare. He is 24. She is 23. Amanda gave birth to fraternal
twins on June 30, 2001.
The young girl is healthy and active. The boy has been in the IWK
hospital in Halifax since the day he was born.
"We don't know how long he is going to be in the hospital,
it won't be for too much longer," said Amanda.
The 10-month-old needs to be under 24 hour care. It wasn't an easy
delivery.
Amanda was induced on a Thursday, but the babies weren't born until
Saturday at the end of a final 12 hours of hard labour.
Logan and Taylor had finally made their way into this world. Two
days later doctors and nurses realized Logan had Down's Syndrome.
Following the birth, Logan's heart valves were in desperate need
of repair.
While on the operating table, his still developing lungs collapsed.
A tube had to be put in place so the newborn could breathe.
Today, the little boy's parents see him as just another child.
"Logan isn't different, he is very special," said Amanda.
Still, it hasn't been easy for the first-time parents, trying to
figure out what the genetic disorder would mean to their family.
"We never knew what it was at first, we were confused, but
never scared," said Amanda.
The reactions of their families was similar. The grandparents were
scared and confused at first because they didn't know what to expect.
Shari Chudy is the resource and information manager for the Canadian
Down's Syndrome Society based in Alberta. She said although screening
tests are used more often, DNA testing provides the best results.
"Screening tests have not nearly the degree of accuracy."
There are approximately 46,000 people in Canada and 350,000 in the
U.S who are affected with Down's Syndrome, which occurs roughly
with every one in 900 births.
"Forty per cent of people are born with heart defects at birth,"
said Chudy.
In 1959, a French physician named Jerome Lejeune identified Down's
Syndrome as a chromosomal anomaly, a mistake in the structure of
the chromosomes. People with Down's Syndrome have 47 chromosomes
instead of 46.
There are three types of Down's Syndrome. Trisomy 21 occurs in 95
per cent of cases. It is most common because it has an extra copy
of the 21st chromosome.
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Three-year-old
Sean Ellis of Dartmouth, N.S., celebrates his birthday by blowing
out his candles on his puppy dog cake. He is one of 46,000 people
living with Down's Syndrome in Canada.
This chromosome
results in the malformation characteristics of the syndrome. Trans
Location, a transfer of chromosomal segments to a new position,
occurs with three to four per cent of people.
The third form is Mosaicism, parts of different chromosomes which
show up in different places, it affects one to two per cent of the
population.
As women get older their chances of having a child with Down's Syndrome
increase. Women age 35 have a one in 400 chance of having a child
with the syndrome.
At 40 it's one in 110. At 45, it's one in 35. It's not the only
risk older mothers face. Twenty-five per cent of children born to
women age 35 develop signs and symptoms of Alzheimer's disease.
"In older women, the fertility rate is lower, resulting in
changes with brain motions," said Dr. Maurice Claybourne, a
pediatrician from Walkerton, Ontario. Screening tests are done between
12 to 20 weeks of conception.
They offer parents a 60 per cent chance of finding out if the fetus
has Down's Syndrome, Claybourne said. Down's Syndrome is not contagious.
It is inherited. The traits can come from either the mother or the
father, although five per cent of cases are traced back to the father.
The chances of having a second child with Trisomy 21 or Mosaicism
occurs in every one in 100 births.
There are approximately 5,000 children born each year with Down's
Syndrome. Only 20 to 25 per cent of those conceived with the syndrome
survive past their birth.
The life expectancy of a child with the syndrome is roughly 55 years.
Children with the disorder can have a variety of traits: low muscle
tone, flat facial profile, an upward slant to the eyes, an abnormal
shape of the ears, a deep crease across the palm, extended joints,
folds of skin in the corner of the eyes, a large space between the
big toe and the toe beside it, and a large tongue.
"Our lives are normal," said Amanda. Logan is not treated
any different than Taylor, his sister.
When asked what the hardest part of having a child with Down's Syndrome,
Amanda replied by saying, "We can't have him home with us."
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