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Globe and Mail December 27, 2008
Xander
Dolski grabbed a
homemade gingerbread cookie from the Christmas
tree, took a bite, then
began tearing open presents, his favourite being
a plastic workbench that reminds him of the
television character Bob the Builder.It
is a ritual that unfolds in millions of Canadian
homes on Christmas, except this was different.
Days before, in this same Manitoba home, mother
Jennifer Martens had lit a candle in memory of
the baby who died three years ago and whose
heart now beats in Xander's
body.Without that transplant,
Xander would not
have lived to see any Christmas, let alone his
third. He wouldn't have known the joy of a toy
drill, how fast plastic cars can race or the
taste of turkey, ham and
perogies that made up his family's
holiday feast.
"It's such a wonderful gift they gave us," Ms.
Martens said of the donor family in a telephone
interview yesterday from her home in Rosser,
Man., northwest of Winnipeg. "Here we are, everything worked out
great for us and there's a family out there who
lost their baby."
Shown here at eight weeks,
Xander Dolski
was only a few hours old when he received a
heart transplant in Edmonton in 2005.
(Jason Scott/For
The Globe and Mail)
Ms. Martens, 33, has been in
contact with the donor family through an
exchange of letters, carefully edited by
transplant officials to remove identifying
information.
"We've said we really appreciate what they did,
that we understand that it's a difficult thing
because we thought we would be in that
position," she said. "We think we understand
what they've gone through. And they feel better
knowing their loss has done some good."
Placed on a transplant waiting list as a
fetus in December,
2005, Xander was
perfect save for a terribly flawed heart.
Without a new heart, he faced certain death
hours after birth.
His chance at life came the way all transplants
do - through another family's tragedy.
Xander's
life is a testament to the magnanimity of the
donor family, perfect precision and
co-ordination in the
Stollery Children's Hospital operating
room in
Edmonton, and a
certain amount of good fortune.
First detected at 20 weeks into Ms. Marten's
pregnancy, Xander's
heart defect was the size of the point of a
ballpoint pen. At the time, it was thought to be
a valve problem that, while serious, could be
corrected by surgery. But as the pregnancy
progressed, it was apparent
Xander's heart was so poorly developed
only a replacement would do.
The aortic valve - the outlet from the heart
that sends the blood to the rest of the body -
was severely restricted. The muscle in the
heart's main pumping chamber was weak. And the
hole between the chambers of the heart, which
fetuses normally
have, was also restricted, so the heart couldn't
blow blood out of the body and the blood inside
the heart wasn't moving properly.
Today, the blond, blue-eyed boy looks more
Gerber baby than transplant recipient. He has an
idyllic family life: a younger brother Preston,
22 months; a sister Tanzi,
four months; and his parents - Ms. Martens, who
works in property assessment for the City of
Winnipeg, and Walter Dolski,
43, a zookeeper.
There were so many gifts for
Xander that "he's
still in the midst of opening presents," Ms.
Martens said yesterday.
Binoculars, a shopping cart and pyjamas were
among Xander's
Christmas gifts, as well as a harmonica from a
favourite aunt. Last week, on Dec. 19, he
received even more presents when he celebrated
his third birthday with a cowboy theme.
"He knows he's different, he knows he has to see
the doctor a lot more often than either of his
siblings do," Ms.
Martens said.
"He knows the doctors will give him pokes and no
one else gets as many as he does."
Although there are no national figures on the
number of fetuses
placed on transplant waiting lists,
Xander's was the
second such transplant by 2005 for
Stollery Children's
Hospital in Edmonton.
The Toronto Hospital for Sick Children has put 26
fetuses on the
waiting list from 1990 to July, 2006, of which
18 underwent heart transplantation, according to
a study published this year in the American
Journal of Transplantation. Seven babies died
following transplant.
(Of the remaining eight, one baby was stillborn
and seven others were taken off the transplant
list by their parents. Five babies taken off the
list underwent heart repair operations, while
two others saw improvement in their condition
without surgery.)
"We probably list about two to three
fetuses a year, and
that's quite a bit," said Dr. Anne
Dipchand, head of
the heart transplant program at Sick Kids and
senior author of that study.
However remarkable Xander's
survival, it has not been without a setback. In
the spring of 2008, Xander
developed what his mother described as a "scary
hiccup."
He was diagnosed with post-transplant
lymphoproliferative
disorder, a serious complication of organ
transplantation.
The condition is caused by an uncontrolled
proliferation of B cell lymphocytes following
infection with Epstein-Barr virus; children and
those with heart transplants are at highest risk
of developing the disease.
Xander has since recovered.
As part of his regular checkups,
Xander has his blood
checked a couple of times a month, and every
three or four months he has an echocardiogram, a
test that uses sound waves to create a moving
picture of the heart. Each day, twice a day, he
takes two anti-rejection drugs.
Yashu
Coe, the pediatric
cardiologist at Stollery
Children's Hospital who treated
Xander, said the
disorder is controllable. He described the
outlook for Xander
as being very good.
"He's done very, very well," Dr. Coe said. "He
looks like a normal kid."
Each year, Xander
sees Dr. Coe to undergo a biopsy of his heart to
ensure he is not experiencing early signs of
rejection. So far, he hasn't experienced any
organ rejection.
"It's very gratifying," the doctor said. "It's a
sense of accomplishment to see him behaving and
taking part in all normal activities."
And years from now, when
Xander grows up, he will take part in
another activity with his mother: the annual
lighting of the candle in memory of the baby who
died on Dec. 18th.
"One day," Ms. Martens said, "I want him to
understand what a huge gift this was."
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