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Ashley was born on a warm Florida summer day in July 1998. We knew
during the pregnancy that Ashley would be born with an abnormality
on or near her ovaries. However, we had no idea the seriousness of
Ashley's abnormality until after she was born.
When
Ashley was born, which was a perfect painfree/drugfree delivery, she
was whisked away to have her first of what would be many ultrasounds
and lab tests. On the day we were to be released from the hospital,
we found that Ashley's total bilirubin level was a 15.8 (normal is
0.4-2.0). Having a jaundice baby is normal, Ashley's big brother
Brad was jaundice at birth too. We weren't worried even though
Ashley's level was really high. What concerned us more was the
result of her first ultrasound. Ashley's abnormality turned out to
be a precancerous cyst on her common bile duct near her liver called
a
choledochal cyst.
Due to the risk of cancer, the cyst would need to be removed when
Ashley became healthier and stronger.
We
were finally released from the hospital on day three post delivery with
orders to put Ashley under direct sunlight to help rid the jaundice.
However, putting her under direct sunlight didn't help at all. We
found that her total bilirubin level jumped to a 21 just 24 hours
after being released from the hospital. My husband and I were
oblivious to what was going on with our baby girl, we were just
being pulled by strings and walking in the direction of the doctor's
voices.
During
Ashley's first six weeks of life, she was poked and prodded with
needles, had to change from breast-feeding to formula feeding so
many times, I am surprised she gained any weight. She had so many
lab tests, HIDA Scans, ultrasounds that we felt we spent more time at the
hospital then we did at home being parents to our then two year old
son. Brad was being neglected and we felt guilty.
Surprisingly, Brad was still a happy toddler that adored his little
sister.
Things
were not getting better. Ashley's health was declining rapidly.
After meeting with a pediatric surgeon and a pediatric GI specialist,
it was determined that Ashley's cyst would need to be removed now!
We had to postpone her baptism in our hometown so her life on
earth could be saved.
Ashley's first surgery took 8 hours, it was supposed to take 3
hours. The cyst was removed successfully but Ashley had something
even more serious. Ashley's liver was badly damaged with cirrhosis,
a biopsy was performed and she was diagnosed with
biliary atresia.
Ashley, we were told, would need a liver transplant by the age of 10
months or she would not survive.
Ashley
has had several surgeries and other procedures to hopefully prolong
her life and the need for a liver transplant. Miraculously, Ashley
has beat the odds and seems to keep the doctors guessing. We are
very blessed. Our faith has brought us thus far and will continue to
sustain us through our journey with Ashley.
In
October 2006, some masses/cysts were found on or around Ashley's
liver. Her platelet count is low, she has portal hypertension,
a spleen the size of a 20 year olds, and varices on her stomach.
Ashley's disease has now progressed to the point that she needs a
liver transplant but ironically she is not sick enough to qualify to
be placed on the waiting list. Ashley's doctors say that two
things need to happen for Ashley to be placed on the waiting list;
she needs to have a major life threatening bleed or those masses in
her liver become cancerous. Therefore, we are monitoring
Ashley very closely with multiple trips each year to Shand's
Hospital in Gainesville, Florida and many tests to watch the growth
of the masses and the degree of her varices.
Ashley has proven to
everyone that she is a fighter and no matter what the future holds
for her, we know she will get through it. We have been blessed
to have her in our lives and to provide us with our new normal life.
Written by Ashley's Mom
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