Charlotte was diagnosed with a rare disease called Biliary Atresia ( about 1 in 15,000 babies are born with Biliary Atresia) on August 20, 2016, almost nine weeks after she was born. On August 23, 2016 she under went a 9 hour surgery called the Kasai procedure and was in the hospital for 10 days. During this procedure, surgeons carefully remove the damaged ducts outside the liver and used a small segment of the intestine to replace the ducts which allows bile to flow from the liver to the intestine. The Kasai was successful and she did well for over a year.
Then, in March 2018, Charlotte became sick again and was referred by her doctors to receive a liver transplant. On May 1, 2018 she was listed for transplant. The estimated wait time is 8 months to a year to wait for a liver.
Charlotte’s life was at risk waiting for the transplant. There are more people waiting than there are livers. This year alone, about 50 children will die waiting for a liver.
As time passed, Charlotte’s liver got worse. One day she was seemingly fine and the next she would spike a fever. On April 24, 2019 Charlotte had found herself back at the hospital.
Then, on April 30th 2019, a few days after Charlotte had been admitted back to the hospital her and her family got the best news of their lives, a match had been found!
When Janessa, Charlotte’s Mother, got the news, she did not know whether to get sick or cry – Janessa was ecstatic that it was finally their time.
Janessa said it’s hard to put into words the gratitude they feel to the donor family who saved Charlotte’s life.
“We’re deeply sorry for their loss,” Janessa said. “It breaks our heart that they lost their loved one. We are forever grateful for the amazing gift of life that the donor has given our daughter and family.”
Janessa is excited for Charlotte’s future. They can’t wait for her to get to be a normal toddler and for her bright future ahead.
“She’s alive today thanks to the transplant,” Janessa said. “She has a long life ahead of her now.”