The second thing she noticed was her slightly yellow skin.
Her pregnancy had been completely normal, and there were no indications of any complications with the baby, so she figured it was nothing too concerning. Even the medical staff seemed to wave it off as normal, so Kelly and her husband took their newborn home and began adjusting to life with multiple kids.
At Sophia’s one-month checkup, though, the doctors noticed she still looked yellow. They ordered a foot poke test but never confirmed the results with Kelly. When she questioned them about it after, they said the results were lost, and they would need to rerun it.
“She was already two months old when we took her back,” said Kelly. “And a new doctor came in and said, ‘Whoa, why is she still yellow?’”
Great question, doc. This time, they got the test results – and it wasn’t what any of them expected.
Sophia’s liver enzymes were through the roof. She had a cholangiogram, which is a special kind of X-ray imaging that shows the bile ducts. With a typical X-ray, you get one picture. But a cholangiogram shows the doctor a live video of the bile ducts so they can see what’s happening in real time.
When doctors looked at Sophia’s, they saw immediately that her bile ducts were obstructed. So, at just two months old, Sophia was diagnosed with a rare liver disease called Biliary Atresia.
It’s a condition in infants in which the bile ducts inside and outside of the liver are scarred and blocked. Bile can’t flow into the intestines, so it builds up in the liver and damages it. That leads to scarring, loss of liver tissue and function, and cirrhosis.
“At that point, she had a procedure done called a Kasai, which was supposed to improve her quality of life and avoid transplant if it was successful,” said Kelly. “The only catch is that surgery has a low chance of success if the issue isn’t caught before two months, and we were a couple of weeks past that.”
Had those first test results not been lost, maybe the outcome would have been different for Sophia. Maybe time would have been on her side. But her family couldn’t play the “what if” game – they could just hope for a miracle.
During the Kasai procedure, the blocked bile ducts and gallbladder are removed and replaced with a segment of the child’s own small intestine. This segment of the intestine is sewn to the liver and functions as a new extrahepatic bile duct system. But unfortunately, Sophia’s surgery was unsuccessful, and her transplant journey began.
“Sophia was added to the liver transplant list in April 2021 at 15 months old, weighing just 12 pounds,” Kelly told us.
In November of that same year, they got the call. Sophia was getting a new liver.
While she handled the surgery well, almost immediately after receiving her transplant, the organ began to fail, and Sophia went into two types of rejection. The doctors tried multiple surgeries, procedures, biopsies, and a host of other things to try to get the new liver to work properly and her body to accept it, but to no avail.
Sophia was an outpatient for two months but got to go home to Spokane. “We knew before we left the hospital in Seattle that she would need another new liver,” Kelly explained.
When she went home after the first failed transplant, her skin was almost a highlighter yellow. They had some family photos taken with Sophia and her cousins, and it looked like her skin had been photoshopped. Kelly shared that photo with us:
She was so sick for so long that over the course of her three-year life, she spent maybe a total of one year outside of the hospital.
“Since this all started, I had to homeschool my kids, which adds an extra toll, especially because Sophia is constantly in and out of the hospital with sicknesses or infections,” Kelly explained. “It’s heartbreaking because my other kids have said they feel like they don’t have a mom. Sophia is such a complex case and needs round-the-clock care, but it’s hard on everyone.
“When you’re in a medical family, it’s not just about the individual battling something. A medical family means everybody.”
In June, they got a call for what they thought was Sophia’s new liver. The hospital ran labs and wheeled Sophia back to the operating room to prep her. The nurse told the family that the incision had been made, and they were just waiting for the liver to arrive.
But 30 minutes later, Kelly got a call from the surgeon. “He asked us to come up and talk with him, and I knew that was abnormal,” she said. “When we got to his office, he wasn’t even wearing scrubs. He told us they had discovered that the liver donor had stage IV thyroid cancer, and they couldn’t use the organs.
“We were so upset – first because an incision had already been made on Sophia, and then because we thought of all the other kids or families like ours who had been waiting on their transplant from that donor.”
Mercifully, two weeks later, on July 17, 2023, they received the call for another liver.
Sophia has tolerated this new organ much better than the previous two, though she did have some early complications that kept everyone on their toes. (“Her liver enzymes spiked again,” Kelly shared. “It happened three times in 20 years, and two of those times were Sophia.”)
Her numbers are still decreasing, and she’s continuing to heal, though the road ahead is still uncertain. Sophia spent so much time in the hospital that she’s had some developmental delays, and she’s struggled with food aversion, too. But the important thing is she has a functioning liver and a chance at a healthy life.
“Sophia has quite the personality,” Kelly laughed. “She’s very loud and happy, and since the transplant, she’s like a whole new kid.”
When she’s not cuddling with her pomeranian, Cheech, she’s probably playing on her tablet, going on walks, or spending time doing her favorite activity: people-watching.
Chive Charities decided to help her take those walks she loves in style, purchasing a few pairs of Billy shoes (designed to be easy to get on and off), a new wagon, and a gift card. The total impact was $3,651.
After two transplants in three years, Sophia deserves to do whatever she wants. She’s experienced more than most of us could imagine, and she hasn’t even hit kindergarten yet. So, to all those donors who selflessly contributed to make this gift possible, we can’t thank you enough.
The whole world just opened up for Sophia. Let’s do the same for another recipient just like her. Join our mission to make the world 10% happier, and DONATE HERE.