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CELEBRATING LIFE from page 17
Hospital in Ann Arbor.
"Our little baby was in a helicopter fighting for her
life without her parents, as there is no room for non-
medical personnel," the Ziffs wrote on the Web site.
The couple arrived at the hospital to see wires, tubes
and machines attached and inserted into their tiny
daughter.
"Once she was airlifted to U-M, I often thought
about what I should have been doing instead of sitting
at my baby's bedside," Lisa said. "While other moms
were wondering when their children were going to hit
the milestones like sitting up and rolling over, we were
just hoping that our baby was going to come off the
ventilator and be able to breathe on her own."
The infant underwent open-heart surgery and a
heart catheterization, then, Adam said. "We learned
the most devastating news of our lives — that without
a heart transplant our baby girl would die," he said.
Shay's name was placed on the organ donor list.
Because Shay was so small, the heart Shay would
receive needed to come from a child under 2.
"We knew that Shay's eventual gift will be the result
of pain and anguish of other loving parents," Adam
said.
'Four-month-old Shay at U-M C.S. Mott Children's
Hospital in Ann Arbor 10 days after her May 2004
heart transplant.
Tiny New Heart
On May 18, a heart became available for Shay and
transplant surgery began the same night continuing
into the next morning.
A few days after the surgery, Adam said his wish was
to see Shay "sleeping in her own crib, crying to have
her diaper changed, playing with toys and doing all
those other things we sometimes take for granted but
that she hasn't really experienced yet."
At that time, he said, "We are so thankful to the
family that decided in their time of tremendous grief,
to think of others in need. Their kind act will give our
daughter Shay a second chance at life."
While the name of Shay's heart donor is kept confi-
dential, Lisa said, "We wrote to the family through
Gift of Life Michigan in Ann Arbor [the intermediary
between the donor hospital and recipient transplant
center], and it is the family's option whether they want
to respond or not. So far, we have not heard from
them."
Advocates for organ donation even before Shay was
diagnosed, Lisa said both she and Adam "have always
been willing to donate organs in the event of some-
thing tragic happening." But their involvemenCin urg-
ing others to be donors has increased dramatically
since Shay's life was saved by the unselfish gift of
another family.
Before a donor was found, Lisa and Adam sent
2,500 letters to physicians around the country and
countless e-mails describing Shay's condition. They
printed and distributed "Donate Life" T-shirts.
"Just passing the word along or registering as an
organ donor is a large and much-appreciated gift to
those whose lives hang in the balance waiting for what
is ultimately the gift of life," Adam said.
"We cannot stress enough to everyone the impor-
tance of organ donation awareness. It is simply the
most unselfish and rewarding gift one can give."
A Homecoming
Last August, after nearly five months in the hospital
— and six major surgeries — Shay finally came home.
2/10
2005
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On Aug. 20, three months after Shay's surgery, her
mom, Lisa, carried her into their West Bloomfield
home for the first time in nearly five months.
Shay, lying in her own crib in her own room, the
night she came home from the hospital in August.
"We had to keep her healthy," Lisa said. "We didn't
— and we still don't — take her to crowded places or
around groups of children or around anyone who is
sick. She came home on tube feedings and 17 differ-
ent medications. This restricted us from going out a
lot just because of the amount of equipment and sup-
plies we needed."
Because Shay remained in the hospital for three
months following her heart transplant, she was
stronger and more stable than if she had come home
sooner.
"I think the scariest thing for us was her medica-
tions and making sure she got them all and that we
didn't give her too much," Lisa said. "Once we got
into a routine, life seemed a little easier."
Shay came home in the summer, allowing her to be
taken out more frequently than in the winter cold and
flu season. "Also, our transplant cardiologist [Dr.
Robert Gajarski, director of the Pediatric Cardiac
Transplant Service at the U-M Medical Center in Ann
Arbor] told us obviously to be careful and use com-
mon sense," Lisa said. "But he told us, 'We did not
give her a new heart so that she could live in a bubble.
We gave her a new heart so she could live a normal
life.'"
Continued Care
Nine months after her transplant, Shay is still is given
a dozen different medications, some multiple times a
day.
"She will always be on immuno-suppressant medica-
tions, along with a few others, I am sure, due to her
mitral regurgitation," Lisa said. That's a disorder caus-
ing blood to leak between chambers during heart con-
tractions.
The Ziffs do not have prescription coverage and
could have been responsible for what Lisa estimates to
be $10,000 to $15,000 a month for medication.
"Fortunately, due to Shay's condition, she qualified for
Children's Special Health Care Services [a program of
the Michigan Department of Community Health in
Lansing]. They cover whatever medications our insur-
ance doesn't."
A large part of Shay's days are spent on things most
1-year-olds know nothing of. Because of developmen-
tal delays, Shay has physical, occupational and speech
therapy. "She is not doing the same things that all
other 1-year-olds are doing, but she is sure working
hard to get there," Lisa said.
Shay also has doctor visits at least every week or two.
Many hours every day are devoted to teaching Shay
how to eat. Ten weeks on a ventilator left her without
instinctual sucking and swallowing abilities. A feeding
tube will provide her with calories she doesn't get from
eating until she is able to take all her medications and
calories by mouth for three months. She has gained
almost seven pounds she's been home.
"Doctor and therapy appointments, medication and
tube feedings restrict her from playing and living like a
normal baby," Lisa said. "However, we make a con-
scious effort to try to incorporate as many normal"
baby things as we can."
Shay will eventually need more surgery, to repair her
mitral valve. "She will also need another heart trans-
plant at some point," Lisa said. "They usually say the
heart will last up to 12-15 years. In talking to other
transplant families, it does not seem like they last quite
that long."
But for now, the family is focusing on the present.
Lisa is now taking Shay to a music class one day a
week. 'And we try to meet friends for lunch, but it's
not always easy. We try to provide her with as much
normalcy as possible," Lisa said.
And celebrating her birthday is one of those normal
things — but hardly one that is taken for granted.
"While at Shay's bedside, my husband and I said
CELEBRATING LIFE on page 21