Olivia’s Gift of Life After a Dire Diagnosis
March 9, 2020
At 8 weeks old, Olivia was diagnosed with biliary agenesis, a life-threatening condition affecting the liver. A liver transplant was Olivia’s only option, or she would not live to see her 1st birthday.
“We have a liver for Olivia.”
The woman’s voice on the other end of the phone was calm and reassuring, but her words changed everything for new parents Megan and Charles. It was their daughter’s transplant coordinator at Children’s Hospital Colorado.
For five months, the family had been preparing themselves for this call, ever since they learned that their baby girl, now 7 months old, would need a liver transplant. It was finally time, and things seemed to happen in slow motion as the couple began to process all that was about to take place.
“We had the gift of life,” says Megan, of hearing the news. “But somebody else didn’t…” her voice trails off as her eyes fill with tears. “It’s very bittersweet,” adds Charles.
Another family’s loss had become their child’s chance for a healthy future.
A Dire Diagnosis
When Olivia was first born, her skin turned yellow, and she had elevated levels of bilirubin, the orangish-yellow substance created when blood is broken down by the body. She had the telltale symptoms of jaundice, a common condition in newborns that usually disappears in a few days.
But after several days of higher-than-normal bilirubin levels, the family was referred to Children’s Colorado for further testing.
Then, at 8 weeks old, when Olivia’s bilirubin levels kept rising, doctors decided they needed to perform a biopsy of her liver. She was initially diagnosed with biliary atresia, a life-threatening liver condition.
Later, when their surgeon performed a procedure intended to correct her malfunctioning organ, he discovered Olivia had no bile ducts at all, an even more serious liver condition known as biliary agenesis.
Doctors sat Megan and Charles down and gently explained that Olivia’s only option would be a liver transplant, or she would not live to see her first birthday.
Waiting and Worrying
Olivia’s condition was precarious, but doctors recommended holding off on a transplant until she was a bit older to give her the best chance of survival. It was a difficult time for Megan and Charles, waiting for their precious daughter to grow a bit bigger for the surgery that lay ahead, knowing that she was getting sicker with each day that passed.
Because her liver could not process fat, Olivia required a special formula for her diet. Even then, the tiny baby struggled to gain weight. Eventually, she required a nasogastric feeding tube to help her get the nutrition she was lacking.
“During Olivia’s appointments before her transplant, I’d keep a strong face and absorb every bit of information, and then cry on my drive home,” says Megan. “But Olivia’s smile always turned everything around.”
By the time Olivia had grown enough to handle the risks of surgery, her condition was so dire that she spent just nine days on the liver transplant list before the family got the fateful call for which they had been so desperately waiting.
Then serendipitously, just after the first day of spring – a time of new beginnings – Olivia received her liver.
She weighed only 10 pounds when she underwent transplant surgery, one of the smallest patients ever to receive a liver transplant at Children’s Colorado. The transplant surgery was a resounding success, thanks to the world-class care Olivia received from Dr. Frederick Suchy and Dr. Shikha Sundaram, both experts in pediatric liver disease, and her transplant surgeon, Dr. Michael Wachs.
Olivia was only in the hospital for 13 days after her transplant. “She recovered really well,” says Charles. “The morning after her liver transplant, her skin and her eyes weren’t yellow anymore. It was night and day. All the yellow was gone.”
Since her liver transplant, Olivia has thrived.
Now 4 years old, she is learning ballet, how to ride a bike and practicing speaking French with her grandparents. She draws constantly, loves to camp and has a vivid imagination. In May 2019, she celebrated the four-year anniversary of her lifesaving operation. Olivia says the scar on her stomach looks like a rainbow. It’s a fitting mark for a little girl who wants to be a unicorn when she grows up.
Every year, the family rides in the Courage Classic Bicycle Tour, a fundraiser for Children’s Colorado, to support the hospital that saved their daughter’s life. As Megan cycles behind her husband, she watches Olivia and her little brother, Milo, bounce and giggle in the trailer that Charles pulls behind his bike. And she starts to cry tears of joy, thinking about what might not have been.
“I am so incredibly grateful to have our doctors and the whole transplant team in our lives,” Megan says. “I’m thankful for being a part of the Children’s Colorado family and for Olivia’s blessed outcome and her contagious smile.”
Coming together to save lives
To avoid rejection of her transplanted liver, Olivia takes an immunosuppressant medication every 12 hours. She is expected to be on the medication for the rest of her life.
Even when a liver transplant surgery goes well, many children still experience life-threatening complications. One of the biggest risks is blood clotting, which can jeopardize the initial transplant. Dr. Megan Adams, a Children’s Colorado transplant surgeon and awardee of the 2018 Culshaw Family Surgical Innovation Scholarship, is investigating the cause of these clots and how they can be prevented.
“This research is bringing together divisions that traditionally don’t work together to come up with the best possible outcomes for the patients,” says Dr. Adams.
A soon-to-be parent herself, she adds: “Becoming a mom has made me look at my job in a different light. I cannot begin to imagine what these families are going through when they hand over their child to us to undergo a liver transplant. I think it has made me a much more thoughtful physician and surgeon.”