In the United States, about one out of every 110 children are born with a congenital heart defect. On October 14, 2016, Henry became one of those children.
Twenty-four hours after Henry was born, the Johnson family was getting ready to go home when a nurse rushed into their room to tell them, “The plans have changed.”
Henry had failed his pulse oximetry screening, a routine test done on all newborns in Minnesota. The test found that Henry’s blood oxygenation levels were critically low. The American Heart Association in Minnesota worked to pass legislation in 2013 requiring all hospitals to perform pulse oximetry screening on newborn babies. If it were not for this newborn screening, it is likely that Henry’s congenital heart defect would have gone undetected.
After failing the pulse oximetry screening, Henry was rushed to a different hospital specializing in infant cardiac care where he underwent numerous tests to determine what was wrong. Doctors diagnosed him with a serious heart condition called hypoplastic left heart syndrome (HLHS). HLHS is usually fatal within the first days or month of life unless treated with operations or transplantation.
At 10 days old, Henry had his first open-heart surgery called the Norwood procedure, the first of three staged open-heart surgeries that he would need. Surgery went well, but recovery was rough. He experienced several complications and spent his first 55 days of life in the hospital.
Once he turned a corner, Henry was able to go home until the Glenn procedure, the second in the series of open-heart surgeries.
“We were very nervous for the Glenn surgery because the Norwood was so hard on him,” said Stephanie Johnson, Henry’s mom. “He showed us his strength in that one. We were in and out in 10 days.”
Between Henry’s second and third surgeries, he was able to live a relatively normal, healthy life. He went to preschool and played sports. He had his third open-heart surgery when he was three years old.
“We knew that with these surgeries, they were palliative. They are not a cure. He is living with half of a heart,” said Stephanie.
Someday, Henry’s heart will get tired, and he will need a heart transplant. The Johnson family hopes they won’t need to go down that road until Henry is an adult, so science can continue to advance.
“Without research and support, we wouldn’t have Henry with us here today,” said Tyler Johnson, Henry’s dad. “We look forward to continued research and developments and a bright future for our son.”
The American Heart Association will honor Henry and the Johnson family at the 27th annual Twin Cities Heart Ball on Friday, November 5, 2021, at the Saint Paul RiverCentre. Laura Groschen, CIO of Business Partner Services at Medtronic, is chair of the 2021 Heart of Twin Cities campaign. For tickets and more information, visit www.heart.org/tcheartball.