Team Give and Take – The Story of Elias and Jessica
In February 2012, two life-changing moments happened. My husband Tony and I began to consider starting a family and my then co-worker, Jessica Hostetter, gave her right kidney – the gift of life – to a stranger. I remember thinking about how selfless her act was and wondering if I could have done the same thing. I’ve been a registered organ donor since I got my driver’s license, but would I consider being a living donor to a stranger?
A little over a year later on July 15, 2013, we welcomed our son Elias into the world. Elias was born 5 weeks premature when I was diagnosed with a life-threatening pregnancy related complication, HELPP Syndrome. Despite his early arrival, he was six pounds and only need a brief two-day stay in the NICU. He had jaundice but that isn’t uncommon in premature babies so no one was worried. When the jaundice continued to worsen rather than improve by the time he was a month old, our amazing pediatrician referred us to an equally amazing pediatric gastroenterologist.
Elias’ liver (green) compared to that of a healthy child.
By mid-August, when Elias was only one month old, we were sitting in an exam room at Nationwide Children’s Hospital. We were given the devastating news that Elias had biliary atresia and would eventually need a liver transplant; basically he was born without a common bile duct. We struggle to find words to describe that day. I think shock was the first emotion we felt. We both were so sure that everything would be ok and that Elias’s troubles were just from being born premature – that he just needed some medication to jump-start his liver. That couldn’t have been further from reality.
Elias had a surgery in September to help buy him more time before the transplant would be necessary. The surgery, known as the Kasai Procedure tied a piece of his intestines directly to his liver to create a passageway for bile to pass through his liver. It was considered a success in the beginning but throughout the fall his health steadily declined. By mid-January 2014, after multiple hospitalizations, a 911 call and a helicopter ride to Children’s Hospital of Pittsburgh, Elias was added to the national transplant list. His health was rapidly deteriorating and he was in acute liver failure. He could no longer wait for a deceased donor.
However, Elias was offered a gift much like the one that my co-worker, Jessica, gave. My husband’s cousin, Zac, offered to be a living donor. Surgery was scheduled within a week of confirming that he was a match. Much like the day Elias was diagnosed, we were in shock. Shocked at Zac’s offer, shocked he was a match and shocked at how quickly things were moving. When we first received a note from Zac that his team of doctors felt he was a match (it still needed to be confirmed by Elias’s team of doctors), I know I gasped when I read it and started to run up the stairs to tell my husband. He had heard me gasp and after so many emergencies with Elias, he started running down the stairs. I stopped halfway up the stairs and started to read Zac’s note. I suddenly felt the need to sit as I quickly became overwhelmed by emotion. So I sat down right in the middle of the staircase and continued reading. Then my husband sat down, just a couple steps above me. So there we sat, on our stairs, reading information that would change our lives forever.
On February 26, 2014, at just seven months old, Elias received a portion of Zac’s liver – his gift of life.Throughout the entire process, Jessica’s support was amazing. Though her surgery was much different than Zac’s, she understood the process. She understood the weight of such a gift. Not only that but she supported our family. She provided updates on Elias to our co-workers. She coordinated care packages during our 47-day stay at Ronald McDonald House of Pittsburgh. She sent me random emails and text messages completely unrelated to transplants, hospitals and medical jargon simply because she knew I needed the distraction.
How can we thank the people who gave the ultimate gift? The only thing I can think of is to pay it forward and advocate for organ donation. That is where our Dash for Donation team name comes from. Team Give and Take is in honor of the living donation gifts Jessica gave and Elias took.
Elias is thriving and we are hopeful that he will be able to join our team on Dash day. It will be an especially exciting day for Team Give and Take as the race is just three days before Elias’s first birthday, a day we were not sure we would get to celebrate.