Bloomington, Indiana – June 6, 2016 – June is a month full of family and fun, especially on the third weekend of the month when families gather to celebrate dads. Father’s Day has become a very special holiday for the Thomas family of Cecil, Pennsylvania. They experienced a miracle when their daughter, Rachel, received a portion of her daddy’s liver … and a second chance at life.
Rachel’s transplant journey began before she was born. During a pregnancy exam, the baby was diagnosed in utero with at least one choledochal cyst that formed on a bile duct. Kristi and John Thomas were slightly puzzled because they had three children at home who did not have this condition. Little did they know the discovery of this cyst was just the beginning of their journey.
After Rachel was born on July 15, 2011, Kristi and John were aware something was not right. Her first few months of life were filled with recurring trips to the hospital for failure to thrive, jaundice and other medical issues. They remember the day well when Rachel was diagnosed with biliary atresia, which is a deadly disorder because the bile ducts do not allow bile to flow. A surgical Kasai procedure was performed in September 2011 to directly connect her liver to the intestines and remove the detected cyst, but this was not considered a cure and actually created a new list of problems for the tiny infant.
Rachel suffered with cholangitis, which is a bacterial infection of the liver that was caused by the connection to the intestines. This problem was even more severe for Rachel because of additional cysts that were discovered within her liver. These cysts were a breeding ground of antibiotic-resistant bacteria, which made Rachel constantly sick and prone to serious, untreatable infections. In addition, she was struggling with esophageal varices, or internal bleeding within the esophagus. In January 2014, Rachel underwent another surgery to have a shunt inserted into her liver to address portal hypertension that was causing the swollen veins and internal bleeding.
According to Kristi, “Rachel has always been tough. From early on she gave the medical team a hard time. I cannot tell you how many medical personnel she has peed on, pooped on or kicked. It always took several people to draw labs or do any testing. As her mom, I used to get most concerned when she didn’t fight back because that meant she was too sick to do so.”
During the spring of 2014, Rachel’s condition worsened, and her medical team at Children’s Hospital of Pittsburgh finally told Kristi and John there were no other options. Rachel had to be listed for a life-saving liver transplant. In May 2014, John started the process to be evaluated as Rachel’s living liver donor, and Kristi placed a call to the Children’s Organ Transplant Association (COTA) to find out more about fundraising for transplant-related expenses.
COTA uniquely understands that parents who have a child or young adult facing a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of trained volunteers. A COTA fundraising specialist traveled to the Thomas’ hometown in Pennsylvania to conduct an on-site training. The COTA in honor of Rachel T team of volunteers quickly started organizing fundraisers and raising awareness about the ongoing transplant-related expenses, including those of potential Donor/Dad John, the family would be facing for a very long time.
On June 2, 2014, John donated a portion of his liver to then two-year-old Rachel. Both recovered quickly and Rachel was discharged from the hospital nine days post-transplant. But the reality is her transplant journey will never really end. Rachel has an extensive list of foods she cannot eat, special places she cannot go, things she will never be allowed to do … and she will need to return to the hospital any time she has a fever. But the bottom line for Kristi and John is that Rachel is alive, and for that they are eternally grateful.
“Our COTA volunteers’ willingness and excitement to help raise funds for transplant-related expenses gave us a sense of peace, and gave us hope. We knew we had friends who were constantly praying for us and who ‘had our backs’ no matter what would come. On top of that we had no reason to be concerned over financial issues — even unforeseen complications at some point in the future. COTA has enabled us to focus on Rachel, her health, and the rest of our family,” said Kristi and John.
In May 2015, Kristi blogged on Rachel’s COTA campaign website, “We are very thankful that we have made it to the one-year post-transplant mark without any episodes of rejection.” An amazing update indeed.
Rachel has had a few medical issues post-transplant, but overall life is immeasurably better. Rachel is an active and happy little girl who loves playing with her older siblings and does very well keeping up with them. According to Kristi, Rachel (now four-years-old) has already expressed she wants to be a doctor when she grows up. No matter where Rachel’s amazing journey takes her, she will always take a piece of her Dad with her.
Truly the best Father’s Day gift.
For more information about the Children’s Organ Transplant Association (COTA),
or to find a COTA family in your area, please email gro.a1516438584toc@m1516438584ik1516438584.