Bloomington, Indiana – October 3, 2016 – October is Liver Awareness Month, which is the month touted by the American Liver Foundation to raise public awareness of the importance of liver health. More than 30 million Americans have some form of liver disease. This October an Illinois mom is thrilled to be chasing her high-energy toddler all over the house and listening to his happy yelling — behaviors that are attributable to his new, healthy liver … and his second chance at life.
Aris Pettis was born in the spring of 2013. Mom, Jessica, and her daughter, Tressa, were thrilled to be welcoming a new addition to their family. However, the newborn seemed to be struggling from the start. Two days after his birth, Aris was transferred two hours away from his hometown to St. Louis Children’s Hospital where he was admitted to the Neonatal Intensive Care Unit (NICU). On that same day, Jessica heard the unbelievable news. Aris had been diagnosed with propionic acidemia, which is a rare metabolic disorder that many times ends in death for an infant. The news took Jessica completely by surprise, and she was devastated.
Aris was not released from the NICU for several weeks — over a month since he was transferred to St. Louis. With her little girl two hours away at home attending preschool and with worrying about her job as an elementary school teacher back in their hometown, this single mom was stressed and struggling. Once she was able to return home to Springfield with Aris, Jessica started to feel a little relief. However, the reality was that managing Aris’ illness was almost a full-time job in itself. Between June 2013 and February 2014, Aris was continually hospitalized due to complications from propionic acidemia. Each stay was about a week in duration, but his December 2013 hospitalization was over a month, which caused Jessica’s stress and worry levels to continue to grow.
Finally in February 2014, Jessica was told it was time to have Aris evaluated for a possible liver transplant. While somewhat shocked, Jessica knew a liver transplant might be the only thing that would help Aris live life fully with his metabolic disorder. According to Jessica, “His doctors and I were doing everything we could to manage Aris’ propionic acidemia, but it was definitely winning. A liver transplant was inevitable to save his life.”
Aris was not even a year old yet and he had already spent more than half of his life inpatient. Jessica was worried about his long-term health, but she was also worried about the medical expenses they had accumulated to date. The thought of the costs associated with a transplant in a city nearly two hours away started to feel unmanageable. As the transplant team started to talk to Jessica about all aspects of a transplant, a transplant professional encouraged Jessica to reach out to the Children’s Organ Transplant Association (COTA) to learn more about fundraising for 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 Springfield, Illinois, to conduct an on-site training with a group of volunteers. The COTA in honor of Aris P team of volunteers quickly started organizing fundraisers for transplant-related expenses.
“Once I found out that Aris needed a liver transplant, I became very worried about all of the expenses. How was I as a single mother going to be able to pay the medical bills and all of the household bills so we didn’t lose our home? Once we started working with COTA, I instantly felt my first sense of hope. COTA was the initial sign that things were going to be OK. COTA took my mind off bills, expenses and the stress of all of those details and allowed me to focus on Aris’ care. COTA, and our amazing team of volunteers, allowed me to be calm,” Jessica said.
Jessica started using the COTA campaign website blog as soon as she decided to start working with the organization. She felt it was the best way to keep her family members, friends, work colleagues and Aris’ COTA volunteers (Aris’ Army) updated.
Thursday, April 10, 2014 … While I was teaching today, Aris’ transplant coordinator called at 12:25 pm. It was the transplant call. My colleagues covered my students, I left to pick up our bags, I picked Aris up from daycare and we drove to St. Louis.
Friday, April 11, 2014 … I did not sleep much last night. Walking Aris down to surgery was a bittersweet feeling, and I was very nervous and afraid. The surgeon did not want Aris back there until they were closer to having the new liver ready. Waiting for Aris’ liver transplant surgery to begin, I played with him until he got sleepy. He finally fell asleep lying across me. This was very important to me because I am sure it was a sign that my baby, who could not talk at the time, was telling me ‘It’s OK, Mommy, I am strong.’ Aris was taken back at 5:30 am. They had difficulty getting IV and arterial access so the transplant did not start until 8:40 am. Around 11:34 am they said his new liver was in and they were starting to connect all the veins and everything. At 2:34 pm he was out of surgery. The doctor came in and said everything went well. They were not able to close him all the way and it would take two more times until they got everything closed.
Sunday, April 13, 2014 … Last night was rough but they finally found out IV morphine every two hours was the trick. He was comfortable and less agitated. He will return to the OR either tomorrow afternoon or Tuesday.
Wednesday, April 23, 2014 … Aris’ First Birthday!!! Today was absolutely amazing. Aris was up quite early; it was like he knew it was his birthday. All of the transplant team told him Happy Birthday. Aris received many balloons and cards and he had many visitors as well. He was able to enjoy chocolate cake, which was not possible pre-transplant.
Sunday, April 27, 2014 … Aris had a wonderful day with Big Sis Tressa and Grandma and family. Grandma held Aris for the first time since April 9th and she cried tears of joy. Sissy played bubbles with him and they both enjoyed it.
Thursday, May 1, 2014 … Discharge Day has come!! I had to do many things today so we could be released to local temporary housing. We are staying locally for a while to get labs and be closer to the hospital. I have to have medicine teaching time today as well.
Wednesday, May 7, 2014 … Who’s ready for this news??? We are home until Friday! We go back to St. Louis on Friday, but we are sleeping in our own beds tonight. Thanks for your prayers and support.
Today, Aris is a strong and independent three-year-old. He is learning to ride a bike and is starting to peddle on his own. He is eating like a champ with his favorite foods being chicken nuggets, fish sticks, bread sticks with Alfredo and Cinnamon Toast Crunch. Aris’ two favorite things to do are reading books and going to the zoo to watch the animals. “Aris is running and jumping and playing like an average three-year-old, which I was not sure ever would have been possible, Jessica said. “He is learning so much so quickly; he is like a little sponge. Watching the lives he touches and the hearts he fills makes me feel so lucky to be his mom.”
Jessica is once again at the helm of her third grade classroom and Aris attends half-day preschool. Life is ‘normal’ for this family, and Jessica is very thankful for the support she has received, and continues to receive, from her COTA family.
For more information about the Children’s Organ Transplant Association (COTA),
or to find a COTA family in your area, please email gro.a1490856602toc@m1490856602ik1490856602.