Donor decision gives Carter life with new liver

Everything seemed perfect and life was blissful as the Bertrands welcomed newly born Carter into their lives on April 16, 2011 at 12:37 a.m. weighing 7 lbs 7 oz.
In that moment, Carter Bertrand knew a mother’s love, a love that knows no bounds and continues to grow with each passing moment.
Two days later the couple was home with its new bundle of joy. This is Carter’s story, in his mother’s words:
Carter was jaundiced and our pediatrician had labs drawn from him the day after discharge.
The doctor said he was okay, so we thought he was. A few family friends mentioned his jaundice as they saw Carter for the first time.
Carter soon developed bilateral inguinal hernias, which were soon to be interpreted as a blessing in disguise. When seeing the pediatric surgeon, who was to correct the hernias, he knew upon seeing Carter and his color, there was something going on with his liver.
Carter had his first surgery at nine weeks old to correct his hernias and attempt to fix his liver problem. When the surgeon injected a tracer through the ducts of Carter’s liver, it didn’t flow properly. The most common diagnosis of this, thought to be a structural problem, is biliary atresia.
This disorder occurs when the flow of bile either inside or outside the liver doesn’t work right. Carter had a gallbladder Kasai procedure to attempt to fix it. We waited anxiously to see if the surgery would be a success or, our worst fear, a liver transplant would be necessary in his future. I just knew in my heart he was going to be okay, but that would come in time, I would later find out, another blessing in disguise.
Carter didn’t get better and had a transplant evaluation in Houston, Texas at four months old. A little over a month later, he stopped eating and a tube was inserted into his stomach in order for him to eat.
I didn’t want it and thought there must be someh way we could get him to eat. It, too, was a blessing because it allowed him to receive nutrition. It is common for a person with liver disease to loose appetite, I found out.
When he was seven-months-old, Carter was put on the transplant list. “Was this really happening?” I asked myself.
Divine intervention occurred over the next eight months. Carter became Status Seven (wouldn’t receive a liver if a donor became available because he was doing so well) and he was off the transplant list a few months after that, at 16 months.
That was almost a year to the date that he was listed with an essentially non-functioning liver. The older a child is going into a transplant, the better the chances and easier on the child, another blessing. We held out hope that Carter would be fine, an answer that was to come later, once again.
In late fall of 2012, labs and scans were run, and they revealed a nodule on the right lobe of Carter’s liver. This was to be watched as the doctors thought it was progressive scarring on his liver. Cirrhosis, or scarring of the liver in Carter’s case, results from bile in places where it shouldn’t be. It becomes a toxin to the liver, scarring it.
Carter also had bilirubin accumulation in his skin which caused him to itch. Aside from continued therapy, which started when he was nine-months-old to work on areas delayed in development because of all his medical experiences and the NG tube, Carter was doing well.
But he began to itch more in December of 2012. He would scratch to the point of making himself bleed. This was God’s way of getting our attention again. The doctors would find a nodule in Carter’s left liver lobe of his liver in March 2013. After a closer look at the original nodule, which was by then getting bigger, doctors confirmed that Carter had a carcinoma.
The particular form of cancer evolves from scar tissue and the only treatment is removal. Carter was listed on the transplant candidate list as soon as he could be after this diagnosis. Upon hearing “cancer” and that its only form of treatment was removal, my husband and I went into research mode.
We had an appointment for living donor evaluation and attempts to get him dually listed while we waited. Again by the grace of God and so many intercessory prayers, that didn’t come to pass. All this time we hoped he wouldn’t need a transplant and now we wanted one.
After 32 days in the hospital, 18 additional days of testing, and being listed on the register for only six days, Carter got a new liver! So many mixed emotions were going on during this survival mode time, one of which was the realization that another family was losing a child as we were gaining ours.
What a sacrifice on their part -- they were literally allowing Carter to live by giving us a part of their child on April 24, 2013 at 5:50 a.m.
Carter spent 16 days in the hospital because he retained fluid after contracting a virus. We also had two other post-op stays totaling nine days due to another virus.
While Carter was in the hospital we began to see the difference a good liver can make.
Carter was always a happy, good child but now we had a silly, giggly little boy. About a month post-transplant, at 25-months-old, Carter began to WALK! After 22 months of having a feeding tube, four months post-transplant, Carter was EATING by mouth!!!
Carter’s diagnosis, hypercholanemia, came seven months post-transplant. This genetic disorder causes the cells to be leaky, allowing bile into places it shouldn’t be. The range of symptoms can be mild to extreme like Carter’s case.
If you didn’t know Carter had a liver transplant, you wouldn’t be able to tell.
We are still working on a few delays in therapy but Carter is so blessed, as we are to have him, all because of a multitude of intercessory prayers, support from our doctors, therapists, community, family, friends, God and our donor family, who chose to give the gift of life.
Along this journey, I kept thinking this is it, but it was only time for another blessing in disguise. All whose lives have been touched by Carter have grown so much.
We are all so much more appreciative of the little things; they are so beautiful through our eyes. We are appreciative for life, we marvel at Carter being able to eat by mouth, and it brings tears to our eyes to see him play like a “normal” child.
I am not the same person I would have been if this didn’t happen in my life. Carter’s story isn’t just for us. Question everything, marvel in every moment, praise God for everything and give the gift of life (register to be an organ donor https://donatelifela.org/ 1-800-521-GIVE).