ole entered the world in August 1999 - a bouncing baby boy with an eager
brother and a loving family. Complete with a big dog in the back yard “Rudy”,
his was to be a life full of comfort and happiness. But 2 1/2 months after he
was born, Cole was diagnosed with a rare liver disease called biliary atresia, a
condition in which the bile ducts that drain bile from the liver to the
intestine are either blocked or absent completely. The cause of the disease is
unknown, but it isn’t believed to be hereditary. With the blockage -- or absence
-- the liver can’t perform normal. Biliary Atresia can be corrected by a common
procedure known as the Kasai, which works well into adult hood for about 1/3 of
the patients who undergo it. The second thirds are OK into late childhood but
eventually need a transplant. Cole, however, fell into the remaining third. And
after two Kasai procedures and seven months of life, he needed a liver
transplant.
While they waited, the Family toted Cole around as they hoped each blood test,
each live enzyme, each doctor would offer something new. But as time passed, the
family knew that they must rely on a strange to provide a miracle. Someone who
suffered a tragedy of their own, but was willing to help someone else.
Always, but only as a last resort, doctors mentioned using a live donor. This
option seemed almost impossible, offering up part of an organ carried a lot of
risks. For one, and most importantly, Blake might be left without a mother. “You
just can’t choose between your children,” Cindee said. As she spoke then, little
Cole gurgled and smiled. With the exceptions of his pouched out belly and
jaundice, it would be difficult for anyone to know he was different. But on that
day early in March of 2000, Cole was about as normal as he would be for a long
time.
Just a few hours after a benefit St. Patrick’s Day dance was held on his behalf,
Cole became very ill. Doctors in San Angelo said he had a bacterial infection.
He was taken to Temple Texas by life flight where doctors said he needed a
transplant soon. The sicker Cole grew, the more imperative the need for a
transplant became. Soon, the Cole's Family knew the only thing that would save
their tiny son was a live donor transplant from Mom.
The only reason they did the live donor transplant was because he was going to
die. What happens when they have so many bacterial infections is that the liver
just deteriorates, and lot of time when they get to that point they die. And
it’s at this point that he was. It was his third bacterial infection, and you
can only have so many before they won’t even do a transplant. They want a
certain amount of stability and he had reached the stage where he probably was
going to die if he didn’t get a transplant.
We just glimpsed at the fact our son would die, but we never thought, “OK that’s
it”. We just buckled down and did what we had to do, save our son! Cindee “Mom”
was a perfect match for Cole. They had the same blood type, Cindee’s size also
helped. So Mom gave 1/3 of her left lobe of liver to her son. Although Cole
spent several weeks in intensive care to become strong enough for the surgery,
Cindee checked in the night before. When doctors and nurses entered her room the
next morning, Cindee couldn’t have been more ready. She doesn’t recall much
about that day except saying “Let’s do this! Let’s do this!” Cindee was, she
knew, saving her son’s life.
Prior to surgery, the two were prepped lying side by side. Cindee reached
through the rungs of Cole’s crib and touched his tiny hand. With any luck -- or
maybe God’s grace -- they would find one another again, in the same place,
healthy.
Their families had the hardest job that day. For 10 ½ hours, they sat with a
telephone receiver in each hand, taking calls from two separate operating rooms,
receiving updates on a couple of people they loved the most. When the transplant
was complete family members got to visit Cindee in one recovery room and Cole in
the other. The transplant was over but the ordeal still lay ahead. Cindee and
Cole, however, shared a rare moment soon after the transplant. One of those
moments when a mother knows everything will be OK.
About a day and a half after the transplant, Cindee finally found the strength
to go to PICU. (Pediatric Intensive Care Unit). Very weak and not feeling well
at all Cindee needed a wheelchair to get to Cole. She made it to the crib where
he lye with tubes and monitors and everything you could imagine. I leaned over
the poles and looked at him and he woke up, and he looked at me, and put his
hand in mine and went back to sleep. I don’t know if he was saying thank you or
what, but it’s just one of those mother son moments that I’ll never forget.” I
knew he knew what I had done for him and it was well worth every pain I had and
would endure.
There have been many moments since. Cole has had rough patches, He is now 8
years old. He has developed severe food allergies, anemia, high blood pressure,
and has had three seizures. At this time Dr’s think he has portal vein
hypertension, an enlarged stomach and pancreas. No diagnosis yet, just tests
confirmed these findings. Dr’s are following his care and monitoring his
closely. He now has a port a cath which blood work is drawn from. He takes a lot
of medication and will continue for life his anti rejection med “Rapamune”.
“I’m not any kind of hero, but you hear so many stories about people who find
babies in a trash can or who are thrown away. I just would say to those people
“Love your children. you never know how long you’re going to have them”.
Today we are doing OK, we may not always be, but today is enough for us. Cole is
alive and he is a true blessing.