directorate of Plans and Requirements Technology branch.
Marks and his wife Joann discovered their daugh-ter had this disease at her six- week well- baby appoint-ment.
Rebekah suffered high bilirubin, usually seen as jaundice, and clay- colored stools. After confirming the
diagnosis they immediately medivac'ed her to Walter Reed Medical Center, Washington, D. C. Rebekah spent
the first two years of her life there fighting infections. At nine weeks old, Rebekah had her first Kasai
surgery. Her damaged ducts outside the liver were removed and replaced with part of her own intestines
by Airman 1st Class Jennifer Gregoire
HQ AIA/ PA
Kelly Air Force Base, Texas
Rebekah's Rebekah's Rebekah's Rebekah's Rebekah's life- long struggle
M people who abuse their body with alcohol, not a 13- year old girl born with biliary atresia. Rebekah's parents never imagined she would need a life- saving
liver transplant in 1995. Biliary atresia results in inflammation and obstruc-tion
of the ducts that carry bile from the liver into the intestine, trapping bile inside the liver. They didn't
know it at the time, but their daughter's liver slowly started to suffer from cirrhosis shortly after being
diagnosed. Her healthy liver cells were being replaced with scar tissue, interfering with blood flow through
the liver. "We saw her stomach getting smaller, and we
thought that was good because the swelling was going
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photos by Gloria Trevino
Rebekah Marks pets her cat Max.
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13
to allow excretion of bile from the liver. This worked for a while and
her jaundiced appearance turned into a glowing complexion. What
the doctors didn't know was that her intestine eventually twisted,
preventing the bile from exiting the liver.
The bile and bacteria build- up caused numerous infections. Eigh-teen
months passed until the intestine was finally untwisted in
the third major surgery Rebekah had before the age of two. The
infections disappeared for the next eight years.
"She would suffer episodes of jaundice with a fever and be tired
for three days to a week, but they were spread out
every few months to about a year," said
Joann. "Rebekah spent a lot
of time lying around, but that was okay because
she loved to read," said Ronald. Rebekah was
always below the aver-age weight and height
for her age. Because there is no
cure for biliary atresia and the cause of the
disease is unknown, doctors knew that she
would eventually need a liver transplant for long-term
survival. When Marks was stationed at
Patrick Air Force Base, Fla., it was recom-mended
that Rebekah be evaluated for a liver
transplant at Wilford Hall Medical Center, San
Antonio, Texas. On Dec. 10, they
arrived in San Antonio and planned to be back
in Florida the following week to visit family at
Walt Disney World. "Getting a liver
transplant was the furthest thing from our minds, although Rebekah
had lived with this liver disease all of her life. I think we were at a
stage where we thought everything would just continue as it was," said
Joann. "At that time we looked at her
and we said 'She looks great, she's growing, she's healthy, why put
a liver in her? '" said Ronald. "But it was a false sense of
security." Both parents had concerns about a possible trans-plant
because they thought it would be exchanging one set of
problems for another. Besides, they thought they wouldn't have
to worry about getting a liver for ten more years. What happened
next shocked them. On Dec. 13, Rebekah was
undergoing routine tests at Wilford Hall and unexpectedly threw up
approximately two quarts of blood. Her cirrhosis of the liver caused
changes in her blood flow and
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Rebekah loves to read and her parents, Ronald and Joann Marks, spend time with her playing games and
walking around their neighborhood.
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December 1997 14
veins in her stomach and esophagus enlarged.
Increased pressure in these veins caused
internal bleeding. Even a few years earlier,
Rebekah had complained that it hurt to swallow
her food and once in a while she would throw
up after eating. "She needed help. I
wanted to do everything I could to make sure she
got everything she needed. If she was scared
or in pain, we would comfort her. Knowing
that we may lose her was hard. Right after she
started hemorrhaging, she said to me she
thought she was going to die. That was hard," said
Joann. The Marks family
realized just how serious the situation was when
she went on the liver transplant list as the top
priority days later. "God intervened and
took care of us. He spoke to our hearts and he did it through
so many people by putting them where we needed them. When the
nurses would cart our daughter off for a surgical procedure, we would
cry uncontrollably and the nurses would join us in that grief," said
Ronald. "We belonged to a small church of about 25 people. When
they found out about our problem, they immediately put our pastor on
a plane to help us deal with this." "We knew by Dec. 18, that she
was going to need a liver trans-plant right away. Someone was
going to have to die in order for her to receive a liver. Another
family was going to lose someone dear to them and I found myself
praying for them," said Joann. Two days later a liver became
available for Rebekah, but the fight was long from over. Doctors
warned there is always the risk the body would reject the liver. The
transplant lasted from the evening of the 20th to the morning of the
21st. Rebekah pulled through the surgery and spent Christmas Day
in the intensive care unit. "A week before she was re-leased
from the hospital, they thought she was rejecting her liver
and did a biopsy. The area between the liver and the intestine is sup-posed
to flush out a few days after the transplant. It didn't, so it
altered some of her lab results and the doctor thought it was rejection,"
said Ronald. "Many transplant patients have
problems, but we have been grate-
ful everyday because she hasn't. She started
out with a lot of medication, but now
she's just down to one," said Ronald.
"It wasn't one of those experiences where
it felt like it was happening to someone
else because it was very real, each and every
moment of it. From the time she started to
hemorrhage until she was discharged Jan. 8,
seemed like one long day. Since we spent the
first two years of her life at Walter Reed, it
somehow prepared us for this," said Joann.
"Just as salvation is the ultimate gift, there
is nothing that we did to deserve this. I have a
better understanding of grace and of gifts that
are not expected to be repaid. My selfishness
has been blown away. I once neglected family,
self and God. I hope I never go back to that. I look at my
daughter and her spiritual and emotional health is more important
to me," said Ronald. "We were afraid to tell her for
a long time where organs and livers come from. I thought it
would be difficult for her to handle and I didn't want her to struggle
with that too. After she was dis-charged from the hospital, we
stopped to check on our furniture shipment and she asked matter- of-factly
'So, where do organs come from? Dead people? ' I explained
that it wasn't like someone died for her, they were dead anyway. She
took it with no problem," said Joann.
Every Dec. 21, the Marks family celebrates Happy Liver Day.
Rebekah has been playing the piano for the past seven years and enjoys
singing. a
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