Resolute doctors help child thrive despite ongoing medical conditions
Asher is friendly, outgoing, curious, smart and full of energy – everything a 2-year-old should be. His joyful smile is contagious as he gives a fist bump to every nurse and doctor that comes by his hospital room. These doctors and nurses are part of his medical team from National Jewish Health and our clinical partner Rocky Mountain Hospital for Children (RMHC). They are committed to ensuring this bright little boy grows up to be strong and healthy.
Asher was born with congenital heart and airway defects – soft, narrow airways prone to collapsing, a hole in the heart and no pulmonary artery – the main artery that supplies his lungs with blood. His toddler-sized chest makes treating these conditions difficult. Doctors surgically implanted a pulmonary artery right after birth, but it pushes on his already weak airways, preventing them from staying open.
“After implanting the pulmonary artery, the team had to insert a trach tube in Asher’s neck and attach a ventilator, which provides constant airflow to keep those airways open,” said his National Jewish Health pediatric pulmonologist. “These have also given him strength to thrive and grow. Since then, we have performed additional surgeries to help relieve the compression on his airway, and our goal, now, is to get him off the ventilator support.”
Asher has had multiple surgeries and lengthy stays in the hospital over the past two years – including a year-long stay in which he was only able to see his three siblings a few times – and there is still more his little heart and lungs need.
Before coming to National Jewish Health and RMHC, Asher saw pediatricians and emergency department doctors who were apprehensive to treat him – even for something as simple as a cold – because of his multiple pre-existing conditions. His parents, Cassandra and Adam, were relieved when they found National Jewish Health pediatric pulmonologists and the RMHC pediatric cardiologists.
“Our National Jewish Health doctors do not see problems with Asher; they see a little boy ready for solutions,” Cassandra said. “They are confident and bring with them a sense of calm, listening to our concerns and trusting our knowledge of Asher. They are not just telling us what will be done to our child. We are a team and come to an agreement on treatments, medications, etc.”
That team includes Cassandra, Adam and many specialists. The physicians do not silo themselves into their specialties, treating Asher’s heart first, then lungs. They collaborate and move forward with a coordinated treatment plan. This type of personalized medicine takes time – time that is usually not reimbursed by insurance. Many parents cannot cover all the costs that incur from years of intensive medical treatment a sick child needs.
“When you have a chronically ill kiddo, they just require so much more,” Cassandra said. “Donations to National Jewish Health go a long way toward covering the extra time it takes to figure things out. For example, his pulmonologist won’t change Asher’s ventilator then send us home to wait and see if problems develop. She sits with us for hours, talking with us and observing Asher until she knows his fragile airways will be alright when we return home. At the hospital, she stops by between scheduled appointments to ensure Asher is progressing and to catch any sign of a future problem before it fully develops.”
This kind of care is what solidified it for Cassandra and Adam that they had the right medical team for their son.
“We talk about Asher’s future a lot,” Cassandra said. “We hope he is able to get off the ventilator, run around and play soccer and baseball. We believe this is the medical team that can make that happen – for Asher and for other kids in similar situations.”
While they wait for the day the trach tube and vent are no longer needed, Cassandra and Adam are teaching Asher adaptability. They tell him there is no reason the ventilator should slow him down. They find, though, that his consistent smile and determination more often teaches them how strong a person really can be, even on the toughest days.