FORT WAYNE, Ind. (WANE) – Addison Rauch was born a healthy and happy baby February 1, 2021. She lit up her parent’s world with her wide eyes and sweet demeanor. As new parents, Nathan and Olivia Rauch noticed every little detail of their new baby. Something changed in Addison when she was three months old.
At her three month checkup, the Rauchs brought up that Addison seemed to be a bit jaundice. The doctor in the Fort Wayne area ran some tests on her just to see what was going on. The following day, they got a call.
“He called and told us that we needed to head down to Riley Children’s Hospital in Indianapolis. He thought she had something wrong with her liver,” Nathan says.
Doctors at Riley diagnosed Addison with biliary atresia, which blocks the ducts that carry bile from the liver to the gallbladder. Addison was taken into emergency surgery for a Kasia procedure to reroute the bile ducts.
“80% of the time that doesn’t work and they need a liver transplant anyway, Addison was part of the 80%,” Nathan explains.
Doctor Richard Mangus who performed the transplant surgery on Addison says, “she went into liver failure, the surgery did not help her. In those children it is urgent to get a transplant because if your liver fails you will die, it’s a terminal disease. In those children you have to get a liver transplant before the age of two.”
“We cried when we found out,” Olivia says. Nathan adds that they questioned, “was it something that we caused, something we could have prevented?” Doctors still don’t know what causes this to happen and are continuing research to find out.
“Around 500 children each year have this problem in the United States,” Doctor Mangus says.
The family was in the hospital in Indianapolis for a few weeks. While there, Addison went through all the procedures to be put on the list for a liver transplant. Doctors told the family that they needed a liver from a donor that was three years old or younger in order for Addison to live.
“Two days before Thanksgiving we got the call that they had a liver for her,” Nathan says. “It was hard to come to terms with, especially going into the holiday season. It’s great that she is getting her transplant but that means that some other family lost their child,” Nathan explains.
“Knowing someone was going to lose their child for her to live, I cried,” Olivia says while she looks at Addison. It is still hard for the parents to wrap their mind around it.
“The child’s parents made the decision to donate their child’s organs to give Addison a second chance. That same donor gave dozens of other kids a second chance and we are eternally grateful,” Nathan says.
Addison has to take anti rejection medication for the rest of her life and live by certain stipulations, but otherwise she is a happy and healthy 15 month old. 5 months after her surgery she is now celebrating life with her family.
Doctor Mangus says he flew to another state to receive the liver for Addison and that donor child saved many other lives.
“We’re in the process of writing a letter to give to the family of Addison’s donor. Putting words to paper is hard, how do you start it?” Olivia says. “Obviously you want to thank them, but more than that we are forever grateful. Our ultimate goal is to meet them some day but just telling them thank you is a big first step,” Nathan explains.
The family wants to learn more about the child that lost their life, to save Addison’s and hope to one day honor them.
April 24-30th is recognized as Pediatric Transplant Week, an opportunity to bring awareness to organ donation and celebrate both recipients and donors. April is also considered Donate Life Month.
“Most people go on the donor list when they get their driver’s license. The discussion becomes very different when you approach the family of an untimely death of a child. The parent’s have just suffered this traumatic event of losing their child and then have to immediately turn around and make the decision of donating the organs can become very traumatic and add to that,” Doctor Mangus says.
Doctor Mangus explains most are happy to donate. “This brings some happiness, some goodness, some relief that has come out of this tragedy for them,” he says. “Children have to have the right size organs and those often only come from children. I would encourage parents to make the difficult decision beforehand, there is some good that can come out of it.”
The Rauch family hopes to show other families who are waiting that they are not alone and that there is hope. The family also wants to bring awareness to pediatric organ donation and want to share that there is nothing negative that can come from it, only positive things.
“It’s a relief, knowing she is going to be ok for the rest of her life,” Addison’s parents say tearfully.