Meet Kid Captain Aiden Washburn
At just 8 years old, Aiden Washburn has already undergone several life-saving open-heart surgeries. His parents were first referred to University of Iowa Health Care Stead Family Children’s Hospital after prenatal tests detected a heart abnormality.
“It was definitely not anything we ever expected,” Aiden’s mother, Josie, recalls. “When we found it out, it was pretty devastating.”
After a 23-week ultrasound and fetal echocardiogram — a specialized test performed during pregnancy to evaluate an unborn baby’s heart — Aiden was diagnosed with hypoplastic left heart syndrome. It's a rare congenital heart defect in which the left side of the heart is extremely underdeveloped and cannot properly pump blood to the body. Aiden also was born with only one functioning kidney.
Preparing for a difficult birth
Before Aiden’s birth, Josie and her husband, Ryan, met with the team at Stead Family Children’s Hospital, who would be caring for their son. Josie remembers pediatric cardiologist Benjamin Reinking, MD, explaining the procedures involved that could help Aiden survive.
“He was super reassuring,” Josie says, her voice breaking as she remembers that time. “I don’t think we could have gotten through without him. He’s a pretty amazing guy.”
They also toured the Neonatal Intensive Care Unit (NICU) to help them prepare for what was to come.
“They went over the whole game plan,” Josie recalled. “We had an idea of what exactly would happen when he was born.”
Josie was induced at 39 weeks, but Aiden’s heart rate dropped, and he was born by emergency cesarean section.
Four open-heart surgeries in four years
Because Aiden was getting too much oxygen for his heart, when he was just 24 hours old, the care team performed Aiden’s first open-heart surgery, using a surgical technique called pulmonary artery banding, which reduces excessive pulmonary blood flow in infants suffering from congenital heart defects.
Just one week later, Aiden had his second open-heart surgery, called a Norwood procedure, to improve blood circulation. The surgery allows the right side of a baby’s heart to send blood with oxygen to the body, a task the heart’s left side normally performs.
When he was 6 months old, surgeons performed a Glenn procedure, another open-heart surgery to assist with blood flow, in which the superior vena cava is disconnected from the heart and connected to the pulmonary artery. The blood from the upper part of the body can then flow directly into the pulmonary artery to the lungs.
Aiden had his fourth and last open-heart surgery, called a Fontan procedure, when he was 3 and a half, to improve circulation. Surgeons disconnect the inferior vena cava from the heart and connect it to the pulmonary artery using a tube to allow some blood to still flow back to the heart and prevent too much from flowing to the lungs right away, so they have time to adjust.
He stayed at the hospital 41 days after he was born, with shorter stays after the subsequent procedures.
“There is no cure for hypoplastic left heart syndrome,” Josie notes. “These procedures basically route the heart, so the right side is doing everything the right and left should be doing. It’s a lot of work for the right side of the heart, and it’s not something it can do forever.”
Additional testing indicated no genetic basis for the condition. Last year, Aiden was diagnosed with protein-losing enteropathy, an excess loss of proteins in the gastrointestinal tract that can be caused by underlying health conditions, such as congenital heart disease.
“With that, he’s losing weight and muscle mass,” Josie says. “There’s also no cure for that, except for a transplant.”
Aiden has ‘a special heart’
Due to his condition, Aiden has started the process of being placed on the heart transplant list. Once on the list, patients typically receive a transplant within six months to a year.
“Looking at him, you wouldn’t know anything was wrong with him,” Josie says, “But he tires very easily compared to other kids. He’s very mindful and understands that. He calls it his special heart. He’ll say, ‘I have a special heart, I’m just too tired and I need more breaks.’”
Aiden’s one kidney is functioning perfectly, she notes, but having the transplant might add to the stress on the organ.
Now 8 and in third grade, the Keokuk boy enjoys science, reading, crafts, and swimming.
“He’s constantly making stuff,” Josie says. “He’s very creative. I can’t tell you how many glue sticks we have.”
Aiden also enjoys watching documentaries about whales, dolphins, and other marine life, and is a good big brother to his younger brother.
“He’s got a very kind soul,” Josie says, adding that teachers often cite his kindness at school.
A hospital worth of support
Josie said she and her husband appreciate the communication from the staff at Stead Family Children’s Hospital, who treat them like family.
“This hospital and its staff are truly a blessing,” Josie says. “I don’t know where we would be or where Aiden would be without all of their hard work and all the amazing care that we the parents have received, but especially the care Aiden has received.”
Aiden continues seeing his doctors at Stead Family Children’s Hospital, with cardiology checkups every three months.
“Every person we have come in contact with has been nothing short of kind,” Josie says. “The extra steps they take to make Aiden feel as comfortable as he can in tough situations means the world to us.”
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