Twins, born a month early in October 2008, Luke and Jake seemed the picture of good health. Joining older brother Gunnar, our family was suddenly full of life (and noise) with a house full of boys!
By the time December rolled around, it became clear Jake was having some health issues and appeared jaundice. Things happened quickly from that point on. Blood tests quickly revealed Jake had elevated liver enzymes. Out of an abundance of caution, we decided to test Luke, as well. Unfortunately, Luke’s liver labs showed the same abnormalities as Jake’s.
Living outside of Chicago, Luke and Jake were quickly seen by the pediatric hepatology team at Lurie Children’s Hospital and scheduled for Kasai procedures to confirm the team’s suspicion that both boys had Biliary Atresia, which is the most common reason for pediatric liver transplants. With the diagnosis, our family began the transplant journeys with our boys.
Within the year, Jake would be placed on the transplant list in the summer of 2009, and after a major GI bleed due to esophageal varices Luke was listed that fall. Jake was ahead of Luke on the transplant list as his liver labs were more severe. However, Luke continued to battle complications and GI bleeds. At one point, their dad, Scott was worked up to be a living donor, but unfortunately the transplant surgeon decided he was not a good match due to a structural issue with his veins.
In August 2011, the first call came, and Jake had a successful liver transplant. Within 12 hours, his jaundice cleared and our pink-faced boy with curly blonde hair was in recovery. The journey was not without hurdles. Jake spent Christmas of 2011 in the hospital with PTLD, Post Transplant Lymphoproliphic Disease. The condition caused lesions throughout his small intestine. After an emergency bowl resection and six months of chemotherapy, the lesions were finally cleared.
During this time, Luke’s complications worsened, and he developed hepatic encephalopathy. Luckily in June 2012 we got the second call with a viable donor, and he received his lifesaving transplant.
Because the boys were both the given the gifts of life by their donor families, they were able to begin kindergarten well into their healing process. The road has not always been smooth, with lots of physical, occupational and speech therapy and many hurried trips to the doctor with viral infections. In third grade, Luke developed Denovo Hepatitis, an autoimmune disorder. Because of frequent monitoring by his transplant team, it was diagnosed early and brought under control with medication.
It’s hard to believe they are now 17 years old and in high school. Considering the life-threatening condition they were both born with, it is truly amazing how vibrant their lives are now. We’re fortunate to have enjoyed so many milestones and made so many memories: learning to swim, performing in school plays, baseball, their 8th grade dance and graduation, and now driving.
Although they are twins, Luke and Jake couldn’t be more different. Luke has an artistic flair and loves cartooning, writing, acting in the school drama club and performing improv. And Jake is our sports guy with a knack for math; he plays high school and travel baseball and golfs with friends for fun.
Their lives are remarkably normal, apart from daily medication and routine blood work monitored by their transplant care team. Once a year, they have a full transplant assessment with additional diagnostic tests. They do this each year like troopers. This proactive monitoring helps keep them healthy by catching any problems quickly so they can be addressed before they become bigger issues.
Unfortunately, in the past few years it has become much more difficult to find access to affordable health insurance plans that allow them to go to their pediatric transplant specialists. Provider networks have been narrowing access, cutting out “learning” hospitals that are typically homes to transplant programs. Luke and Jake each have their own separate policies from our family’s insurance coverage in order for them to be able to see their pediatric transplant care team. Rising deductibles and out-of-pocket expenses are very high. For 2026 we no longer have access to PPO plans allowing them direct access to their care teams and are being forced to navigate HMO insurance with medically complicated children.
This is why COTA’s lifetime partnership—assisting with ongoing transplant-related expenses—is greatly appreciated so Luke and Jake can continue to see the doctors who help manage their transplants and keep them healthy. They are looking forward to graduating high school in 2027 and heading off to college. As adults they will need good jobs to continue funding their lifelong transplant expenses. We want to make certain they can go to college and not have to worry about health care expenses when they should be just focusing on their grades and maybe having a little fun.
Thank you for taking the time to read their story and for helping them thrive and grow for donating to COTA in their honor!
Peace & Love-
Team Swanson
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.