Heart transplant a success for Skillman

On July 27, Ayden Skillman received a total heart transplant at the Children’s Hospital of Colorado (CHCO), which his family hopes will be the culmination of a lifelong journey. Born on May 15, 2006, Skillman was diagnosed with a rare, congenital heart condition at just three days old called Hypoplastic Left Heart Syndrome (HLHS), which affects 2-3 of every 10,000 live births worldwide.
HLHS is a heart condition in which an infant is born with the left-side of their heart severely underdeveloped and incapable of supporting natural circulation processes. In the United States, congenital heart defects like HLHS are diagnosed in 40,000 infants annually and, according to the American Heart Association (AHA), twice as many children die from congenital heart abnormalities each year than all forms of childhood cancer combined.
And so, just a few days old, with such slim chances for survival that a one-block ambulance ride from one specialist hospital in Denver to CHCO was considered life threatening, Ayden had his first open heart surgery. The Norwood procedure, which Skillman underwent that day, increases the odds of survival from less than 88% to greater than 97% in children suffering from complex heart defects like HLHS.
At four months, the Glenn Procedure followed. Doctors planned to reroute blood flow from Skillman’s upper body to his lungs, bypassing his heart, but upon opening his chest cavity, they found his heart in such poor condition that “it looked like a raisin.” Skillman’s doctors ultimately concluded he had an allergic reaction to the bovine graft used on his aorta during the Norwood procedure, which meant the Norwood had to be completely re-done in addition to extensive repair. It took six hours to accomplish this monumental task and the Glenn still had to be done on top of it — from the time Skillman entered the operating room to when he left it was nearly eight hours.
During the time Ayden’s first surgeries were performed, it was dangerous to keep a patient on a heart-lung bypass machine for more than six hours, and this double surgery went well beyond that mark. At the time, there was no advanced technology to monitor brain oxygenation, and the potential neurological and physiological side-effects of such an extended stay on the machine were not well-researched. Several days after the surgeries, Skillman suffered a left-frontal lobe brain hemorrhage, multiple seizures and complete cardiac arrest.
In 2009, Skillman underwent another major surgery, the Fontan Completion with Fenestration, which reroutes deoxygenated blood from the body directly to the lungs, instead of the heart, allowing the heart’s single ventricle to pump only oxygenated blood to the body, thereby reducing the heart’s workload and improving the body’s oxygen levels. Following his operation, Ayden suffered more seizures and was kept in the ICU to monitor his brain activity. Two weeks later, he was discharged and underwent routine cardiac checkups every six months.
In 2015, Skillman was diagnosed with Protein Losing Enteropathy (PLE), a rare complication that sometimes occurs in HLHS patients. At this point, Ayden’s parents were encouraged to work with The Make-a-Wish Foundation to have his wish granted. In 2016, Ayden’s wish was granted, and he and his family visited Universal Studios, Legoland and SeaWorld in Orlando, Fla.
Between 2015 and 2018, Skillman underwent multiple cardiac catheterizations to address his aortic arch narrowing and PLE. In 2018, he attended his first multidisciplinary Fontan Clinic at CHCO. Cardiologists developed Fontan Clinics in response to what they saw as underwhelming recovery in their patients. Many Fontan patients developed PLE, like Ayden, and eventually required total heart transplants. Held every two years, Fontan Clinics have allowed specialists to more closely monitor their patients progress and health.
In 2020, Ayden received a complete psychological evaluation at his second Fontan Clinic, which answered many of his family’s questions about his learning difficulties. Skillman “could never get past basic simple math at a first grade level, reading was a challenge, writing was almost impossible and his speech was severely delayed.” For years, his doctors attributed his delays to the trauma of his early brain hemmorhage, seizure history and extended time on the heart-lung machine, but that he could still heal and rebound. After undergoing his psychological evaluation and MRI, and with his seizure history documented, Skillman’s parents were told that Ayden was suffering from Intellectual Delay Disorder and would most likely never excel beyond a third grade-level. On this basis, his doctors at CHCO encouraged his parents to seek legal guardianship of Ayden to continue caring for him after he turned 18. The state of Wyoming would grant this request in May 2024.
2023 marked a turning point in Ayden’s journey. In May, Skillman returned to CHCO with a life-threatening bacterial infection and remained in their care for three months. Doctors determined that a combination of factors related to Ayden’s PLE and HLHS had enabled bacteria to find a home in his leg, demanding the removal of infected tissue and multiple skin graft surgeries to repair the leg. That October, Skillman was scheduled for another routine cardiac catheterization. At this point, doctors broached the subject of a complete heart transplant with his parents, explaining there was nothing more they could do to improve his heart’s natural function. In November, Skillman was diagnosed with Fontan Associated Liver Disease (FALD), a non-cardiac complication. Over time, FALD can lead to liver fibrosis, which, if left untreated, can become cirrhosis and negatively affect the liver’s overall function. At that same appointment, his family were informed that his Fontan was failing.
Later in November, the Skillmans met with Dr. Everett, a leading transplant cardiologist, and together reached the decision to proceed with formally evaluating Ayden as a transplant candidate. In the United States, transplants cannot happen without some form of insurance or the ability to pay out-of-pocket. In 2020, the average cost of a heart transplant before insurance was $1,664,800.
Following his insurance’s approval to proceed with the assessment, Ayden’s evaluation was scheduled for February 2024 and, following his approval by CHCO’s transplant board, he was listed as an eligible transplant candidate in March. Soon after, Skillman began experiencing advanced heart failure. In June, the transplant team deemed it necessary to place him on an intravenous medication called Milrinone, which required hospital admission and bumped him to a 1A transplant status, the highest a patient can achieve.
The 1A status opened Ayden up to additional transplant options and good news came swiftly. When doctors told the Skillmans they had found a suitable heart, they were left speechless. His mother recalled the experience as “surreal.”
There is a point in time when communication may be opened between a donor’s and recipient’s families, but for now, Ayden’s donor’s information remains anonymous. The transplant team was able to share that the heart came from a very healthy donor and was “really good.” The Skillmans remain thankful for the great gift that was given to them and keep the donor’s loved ones in their hearts and prayers.
Ayden now begins the healing process and the Skillmans plan to make Denver their second home for the next 3-6 months. The first three months post-op are considered the most critical with transplant patients being at the greatest risk of organ rejection during that period. While under medical supervision, a patient’s immunosuppressant medications, which prevent the body’s natural rejection response, will be fine-tuned to their system. Skillman will visit with his transplant team in-clinic once a week for the first three months and have his blood drawn 30 minutes before taking his medications. The team will use his blood work to determine if the current dose is too high or low. By the fourth month, his blood draws will decrease from daily to weekly; by month five, bi-weekly; and between months six and nine, monthly. After the ninth month, Ayden will go without a blood draw until the one-year mark.
If, at any point in the first year, Ayden’s body goes into rejection, he must begin the three-month window all over again and return to Denver. CHCO will continue caring for Skillman until he is 21. Upon aging out of their system, he will be seen by an adult cardiologist.
While the road is long, it is leading Ayden to a happier, healthier and fuller life.
Those curious about financial assistance may donate to a GoFundMe established by Melissa Scott and Family. In addition, a fund for medical expenses has been established at The Bank of Greybull under Skillman Family Donation Account.
To send gifts or cards to
Ayden please address to:
Aurora Ronald McDonald House, 932 N Potomac Circle, Aurora, CO 80011, Room 2B Skillman.