“There were a lot of tense moments during the time she was hospitalized
but Shelby was very well cared for by a lot of very nice people. The medical
center provided us with great support, but what helped us the most was being
able to communicate with other families in the same situation as we were in.
We were able to provide each other support and helped each other through the
tough times. Today, Shelby’s health is wonderful, we just don’t have
any problems.”
Candy, mother of Shelby
Hometown: Kansas
Shelby received her transplant in October 1993 at the age of 18 months.
In Their Own
Words: Stories of Transplant Recipients
The following interviews were conducted in
June, 2004 at The Nebraska Medical Center. Some interviewees were
at the hospital for their annual checkups, some were just out of
surgery and others are employees of the Medical Center.
Renee Ziemba
Mother of baby Taylor Ziemba
Taylor received a liver-small bowel transplant, June 2004
Jackson, Michigan residents
Taylor ended up in the Nebraska Medical Center’s
Pediatric Intensive Care unit after a long bout with a very hard-to-diagnose
illness. It took eight weeks for doctors in Michigan to determine
that Taylor had Microvillous Inclusion Disease, which means her
small intestine could not absorb any nutrients. As a result, Taylor,
who was just a few months old at the time, had to be fed intravenously.
Tragically, her IV nutrition wound up damaging her liver and she
went into liver failure.
My husband and I immediately searched the Internet
for medical centers that do pediatric small intestine transplants.
The Nebraska Medical Center’s stats for survival were really
good and it is listed as one of the number one transplant centers
in the world, so we brought Taylor here in April to be evaluated.
She was so sick they kept her here and two months later, on June
2, she had a liver-small intestine transplant. So far she’s
doing well—in the first week she’s been back on the
breathing machine, but we expect her to be taken off that shortly.
Since we’re from Jackson, Michigan, we’ve
been staying at the Lied Transplant Center, which is connected
to the hospital. We can come to see Taylor any time day or night.
And since we will be here for at least six months as Taylor recovers,
it is wonderful to have this access.
There really is not enough known about organ
transplant in children. As a parent, it’s certainly not something
you ever want to consider—something terrible happening to
your child. But I think if you are aware of stories like Taylor’s
beforehand, and something tragic does happen, you might be inclined
to make the decision to donate. As a mother who has waited for
her child to get an organ, I can tell you that it was a very anxious
time. They told us there was only a 50-50 chance that an organ
would come available for Taylor. Without this transplant, Taylor
would have died.
And now she has a second chance to live
a long life with good quality. It is terrible that a tragedy
must occur for someone else to enable this life-saving surgery,
but what I would say to our donor family is that their child
will always be a part of Taylor and live on in her. There are
no words to express my gratitude for this gift.
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