Stephanie Johnson waited in her hospital room for her newborn son, Henry, to return from a final test.
Her husband, Tyler, started bringing things in the car as the happy couple prepared to drive home around 24 hours after Henry’s birth.
Then Stephanie heard footsteps. Someone was running in the hallway of the hospital in Woodbury, Minnesota. A nurse rushed into the room. Plans had changed.
A pulse oximeter test revealed that Henry had extremely low oxygen levels in his blood. He was due to undergo more tests at a hospital about 20 miles from Minneapolis. An ambulance took Henry away, while Stephanie and Tyler drove.
A cardiologist ordered an echocardiogram, an ultrasound that checks the structure of the heart and its proper functioning. Once the results were received, the doctor took the couple to a small office. The bedroom had a window. Through her, Stephanie was able to see Henry in an incubator.
He was diagnosed with hypoplastic left heart syndrome (HLHS), a congenital heart defect in which parts of the left side of the heart, including the left ventricle and aorta, are too small. This makes it difficult for the heart to pump oxygen-rich blood to the rest of the body.
Stephanie was shaking, fearing the worst. Their first child, Madelyn, born two years earlier, was in perfect health. The Johnsons took it for granted that Henry would also be born without complications.
Then the doctor said, “I can do something for him. The road will be difficult, but we can try.
Henry would need three surgeries over the next few years. Gradually, doctors would increase blood flow to the rest of his body by avoiding the compromised left side of his heart. Specifically, they would create a new connection between the veins returning oxygen-poor blood to the heart and the pulmonary artery so that the properly functioning right ventricle can only pump oxygenated blood to the body.
The first open-heart surgery took place when Henry was 10 days old, his heart was only the size of a walnut. Complications kept him in hospital for almost two months. For much of that time, he remained connected to a fan.
“The only way to know if he was crying is when the alarms would go off, because you can’t hear him crying because of the tube,” Stephanie said.
The second open-heart surgery took place when Henry was 5 months old. Everything went so well that he returned home after seven days. His third operation took place at the age of 3; it would have been sooner, but the onset of the COVID-19 pandemic delayed it until June 2020.
Today, the Johnsons are making sure Henry lives as normal a life as the rambunctious 5-year-old can possibly lead.
In preschool now, Henry looks forward to going to full-day kindergarten in the fall. He loves taekwondo, Captain America and the musical “Annie” – so much that he dances around the house with a broom while singing “It’s A Hard Knock Life”, and even hopes to have a butler one day.
“What has always stuck with me about Henry is his passion for life, even when he was little,” said Jocelyn Berbee, a pediatric cardiology nurse practitioner who is part of the care team. Henry since childhood.
Although the surgeries have made a difference, they are not a permanent solution. Henry will have to see a cardiologist regularly for the rest of his life and may one day need a heart transplant.
“Medical technology keeps advancing, so we don’t know for sure. But that’s been the typical pathway for this heart issue,” Berbee said.
“Right now, everything is working wonderfully,” she added. “But there are also a lot of unknowns that come with it.”
Stephanie hopes sharing her son’s story will help other parents navigate the kind of unknowns and difficult decisions his family has faced.
“It’s just incredibly important that we raise awareness so that not only parents can detect and see the signs of a congenital heart defect in their own children,” Stephanie said, “but also so that these children like Henry can live a full life. , happy lives carefree.”
Stories from the Heart chronicles the inspiring journeys of heart disease and stroke survivors, caregivers and advocates.
If you have any questions or comments about this story, please email editor@heart.org.
Copyright is owned or held by the American Heart Association, Inc., and all rights are reserved. Permission is granted, free of charge and without further request, to individuals, media, and non-commercial education and outreach efforts to link to, quote from, extract, or reprint these stories on any which medium as long as no text is changed. and proper attribution is made to American Heart Association News.
Other uses, including educational products or services sold for profit, must comply with the American Heart Association’s copyright guidelines. See full terms of service. These stories may not be used to promote or endorse any commercial product or service.
HEALTH CARE DISCLAIMER: This site and its services do not constitute the practice of medical advice, diagnosis or treatment. Always speak to your health care provider for diagnosis and treatment, including your specific medical needs. If you have or suspect you have a medical problem or condition, please contact a qualified healthcare practitioner immediately. If you are in the United States and experience a medical emergency, call 911 or seek emergency medical assistance immediately.
