The minute a child is born, every mother looks at fingers and toes to be sure all are there. "I don't care if it's a boy or a girl, just as long as it's healthy," are the words of every parent. But not every child is born healthy, and five of the worst gut-wrenching words uttered to a parent by a doctor are, "Your child needs a transplant."
For Jake and Lindsey Crafton of Kennett, they know those words well. Lindsey recently spoke to Kennett Rotary members about the importance of being a donor. She shared her family's harrowing experience after they were told their daughter, Landrey was born in January 2016 with Biliary Atresia, a rare disease that required a liver transplant. The disease affects around 18,000 in the U.S. and the cause is unknown. There is no cure, and the only remedy is a transplant.
The Crafton's nightmare began when Landrey was only two months old. "We thought she was healthy," said Lindsey. "But then she stopped eating and she slept all of the time. I knew something wasn't right." At eight weeks, Lindsey knew constant sleeping was more than that of a good baby. Another doctor, besides her pediatrician, saw right away that something was not right and after a few blood tests, they were sent to St. Louis Children's Hospital. Lindsey said that a feeding tube had to be used, and after several trips to the emergency room when the baby pulled it out, Lindsey decided to try it on her own. "I had a friend, (a nurse) came over to show me how to reinsert the tube, and the minute she saw her swollen abdomen, she knew it was dangerous," said Lindsey. "After telling us she would need a transplant, the doctors didn't give us any advice on a hospital at all. They just handed us a list of them." The confusion and overwhelming chore of finding the right hospital only added to their stress. Not only was Landrey subjected to numerous evasive tests, but even the family were subjected to psychic evaluations. "You can imagine our mental state at this point," said Lindsey, "then add the stress of a psych evaluation on top of that."
After sifting through numerous hospitals and making even more calls, the Craftons narrowed their choices to the top four hospitals nearest to Kennett. They chose a hospital in St. Louis because they had the highest success rate and the shortest wait time. "Every day 20 people die while on the list waiting for a donor," said Lindsey. The couple made numerous life flights, ambulance rides, and emergency room visits while waiting for that one donor to provide Landrey with a liver.
According to Lindsey, in August 2016, Landrey's condition became critical and she was placed higher on the list, with a scoring that went from 13 to 45. "To think that the chances for a transplant is decided by a panel of people who determine your score," said Linsey. "At a score of 45, she was now at the top of the list."
Many hard decisions are made when a donor is found, and sometimes, the decision to pass on one can be difficult. "We were called about a high-risk donor," said Lindsey. "The only problem, this person was from a prison and had abused drugs. We knew that we could pass and Landrey would keep her place in line on the list, but what if there were no other matches." For the Craftons, it was a chance they had to take and they turned down the liver. However, in the middle of the night the call came with a perfect match, but it was bitter-sweet. "I realized that someone's child had to die to let mine live," said Lindsey, her voice cracking. "Someone lost their baby, and on September 11, 2016, our baby was given a chance at life. For us, that day now carried a whole new meaning."
She explained how one person can provide anywhere from 1 to 85 organs and tissue cells that can be harvested. JoNell Minton, a Rotary member said her family knows the other side of the coin. "St. Louis was wonderful," said Minton. "We were called when they began harvesting the organs and told us how many would be helped and what was being harvested."
Lindsey stressed the importance of being a donor, and how doctors take special care when harvesting the organs, not to damage the body. They also try to have the donor to the family within two days.
"We have written to the donor through Mid-America Transplant Service, because we want to thank them for their sacrifice," said Lindsey. "But, we also want them to see something that the doctors found on their child's liver that makes it even more special for Landrey." Lindsey explained how she asked the doctors to take pictures of the old liver and the new one, so she would be able to compare them; however, she was not prepared for what she saw, and neither were the doctors. "Imprinted into the donor's little liver was the image of a small heart," said Lindsey, choking back the tears. "For us, it was a sign, and we want the parents to know and to share the picture with them."
Lindsey said that the family is speaking out about their daughter and her condition because Landrey can live a normal life to a certain extent, but she will have limitations. "We know that the teenage years are going to be tough, and we need the community to be tattle-tales," said Lindsey. "She will never be able to take a drink of alcohol, and she will have to be careful what she does because even one drink will keep her from being placed on a list for another transplant in the future."