Bloomington, Indiana -- May 2, 2016 -- May is the month set aside to celebrate mothers. Mother’s Day is one of the most universally acknowledged holidays shared across cultures and traditions, and it holds even greater significance for the Hunt family of Lyndhurst, Ohio. Kenace Hunt is alive today because her mother, Shelley, donated a portion of her liver to Kenace. With this gift, Shelley gave her daughter a second chance at life.
Shelley remembers when Kenace was born on May 16, 2012, several doctors knew right away something was not right. Just like other newborns, her bilirubin levels were high, but not high enough to consider phototherapy for the infant. But Kenace’s levels never dropped; Shelley and Dad Sean started to think something was terribly wrong. In addition, Baby Kenace was not gaining weight, her skin constantly itched and she could not sleep. Kenace’s health problems continued to trouble Shelley and Sean and puzzle her doctors. Finally at eight months a traumatic trip to the emergency room led to a devastating diagnosis -- Kenace had a rare disorder known as progressive familial intrahepatic cholestasis type 2, or PFIC 2. She inherited the disease from Sean and Shelley, who were both carriers of the gene mutation that prevented her bile ducts from forming normally. According to Shelley, “The prognosis we were given was death if Kenace did not receive a new liver.”
Due to the PFIC 2, Kenace’s body was unable to absorb fat-soluble vitamins, her blood was unable to coagulate and she was unable to gain weight. Shelley remembers, “She had scars all over her body from all of the itching and scratching. We had to keep her fully covered or she would scratch to the point of bleeding. It was awful. Kenace couldn’t sleep at night, which meant we didn’t sleep at night either.”
In November 2013, Kenace’s team of doctors at The Cleveland Clinic decided it was time for Kenace to receive a liver transplant. After a three-day process of thorough physical examinations, hospital board approval, state board approval and insurance approval, Kenace was finally approved for transplant. Unfortunately, as desperate as Kenace’s health situation was, she was not very high on the liver waiting list. Shelley and Sean were quite frustrated and both decided to be tested as possible living liver donors for their baby girl. The initial testing pointed to Shelley as the best candidate between the two, and after more testing it was discovered that Shelley was a perfect match.
“It was at this point we engaged in a long struggle with our insurance company because they did not want me to be Kenace’s donor,” Shelley said. “After two months of paperwork, phone calls, emails and arguments, the insurance company agreed I could be Kenace’s donor and the transplant could take place at The Cleveland Clinic.” Both Shelley and Sean breathed a collective sigh of relief.
In February 2014, knowing the mom-to-daughter liver transplant had been approved, Shelley and Sean reached out to the Children’s Organ Transplant Association (COTA) to discuss getting help with transplant-related expenses. The Children’s Organ Transplant Association (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 Hunt’s hometown in Ohio to conduct an on-site training. The COTA in honor of Kenace H team of volunteers quickly started organizing fundraisers and raising awareness about the ongoing transplant-related expenses, including those of Donor/Mom Shelley, the family would be facing for a very long time.
Sean remembers staying in the hospital room with Kenace the night before the transplant. Shelley was being prepped and monitored in a different part of the hospital waiting for her surgery. It was a very anxious time for the Hunt family, including their twin daughters, Erin and Eres. On March 17, 2014, a team of doctors at The Cleveland Clinic removed about 20% of Shelley’s liver. After removing Kenace’s diseased liver, they transplanted the portion of Shelley’s liver into the almost two-year-old. Kenace’s new liver, which the family affectionately refers to as ‘Olivia,’ began functioning immediately.
Kenace had an episode of rejection five days after the transplant. According to Shelley, the family literally fell to their knees and began to pray. Kenace bounced back and has not experienced any rejection since then. She was released from the hospital 21 days post-transplant. Kenace left the hospital taking 11 medications, and today she is down to four. She was able to fight the flu twice in her first year post-transplant and according to her parents, she is healthy, active and alive.
Sean and Shelley are grateful to their many friends and family members who have helped throughout their transplant journey to date. They shared, “When you find yourself waging a battle against insurance companies because you are trying to save your daughter’s life, you lose hope. Once we learned about COTA, we started to think everything might be OK. Thinking about your child’s transplant is scary and you worry a lot -- not just about the medical bills but also the time off work, the medications and whether or not she will survive. COTA allowed us to focus on healing and not to worry about the financial woes. COTA took away a lot of stress and gave us hope that Kenace can live a rejection-free life.”
In just a few days, Kenace and her sisters will celebrate a very special Mother’s Day. Shelley gave birth to three amazing girls, and she gave life a second time to Kenace. Today, Kenace’s favorite things are dogs, balloons, bubbles, tutus and anything that is the color pink. It is possible that Kenace’s favorite things will change at some point in the future, but at least she now has a future thanks to her mother’s ultimate gift.
Happy Mother’s Day to an Amazing COTA Mom!
For more information about the Children’s Organ Transplant Association,
or to find a COTA family in your area, please email gro.a1485212517toc@m1485212517ik1485212517.