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transplant services
Diagnosed at birth,
infantile polycystic
kidney disease (PKD)
Some grandmothers bake cookies, some
mark birthdays with crisp bills tucked inside sentimental cards,
others share stories of times past. But Emma’s grandmother gave her
a gift that outshines all others – she donated a kidney and saved
Emma’s life.
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If you would like to
share your life by being an organ or tissue donor, the first
step is to tell your family about your wishes. For information
and a donor card, call the United Network for Organ Sharing at
800-355-SHARE (74273) or visit
www.unos.org.
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On the day Emma was due to be born, as
her family anxiously awaited her arrival, an ultrasound revealed her
kidneys were not working because she had infantile polycystic kidney
disease (PKD), which causes fluid-filled cysts that reduce kidney
function. Arrangements were made to transfer Emma to Texas
Children’s immediately after birth, and before her parents were able
to even have a glimpse of her, they were prepared for the worst.
“When she was diagnosed, we were told
she probably would not live,” says Emma’s mother, Paula.
Those first two weeks in
neonatal intensive care
(NICU) were anxious ones. The cysts on Emma’s kidneys continued to
grow, and when she was five weeks old her first kidney was removed
and a dialysis catheter inserted. But 24 hours later, the second
kidney failed and had to be removed – it had enlarged to five times
the size of an average adult kidney.
“When the second kidney was removed, we
knew there was no room for error,” Paula says. “We prayed the
dialysis would work.”
Dialysis helped – for a while. Emma
went home at 4 months old with a dialysis machine but was soon back
in the hospital. When she went home again at 6 months old,
physicians told her parents she needed a transplant to survive.
The search for a kidney for Emma began
immediately. Several members of the immediate and extended families
were tested for a good match. Emma’s grandmother, Jane, was in her
60s, but ready and willing to do what she could to save her baby
granddaughter. Doctors, however, were hesitant because few kidney
transplants using older donors had been performed. But Jane was
persistent, and aside from age, all the odds were in her favor –
every test consistently favored her as Emma’s donor.
So, a week shy of her second birthday,
Emma received a kidney transplant from her grandmother. The
transplant was a success, and more than 12 years later, Emma feels a
one-of-a-kind bond with her grandmother.
“I always will feel special knowing
that part of my grandmother is inside me,” Emma says.
Years of visiting Texas Children’s left
an impression on the family.
“We can’t imagine being at any other
hospital in the world,” Paula says. “We owe everything to the
doctors and nurses who have done so much for Emma and taken care of
us as well.”
Witnessing first hand the tremendous
impact of an organ donation also taught the family the importance of
all organ donations.
“Whether a transplant is from a living
donor or comes at the time of losing a loved one, it is such a
wonderful gift to be able to do something so amazing for another
human being – that alone is worth the journey,” says Paula.
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