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Henry’s story

Henry the heart warrior

Henry is just like any 4-year-old. He enjoys running, playing at the park and the Avengers. However, he didn’t always have this much energy.

Newborn Henry being held in the hospital with breathing supportHenry’s parents, Stephanie and Tyler, had no idea their son would become an incredible heart warrior when he was born. As they were packing up to bring their new baby home for the first time, a nurse came in and told them plans had changed. Henry’s 24-hour newborn screening showed his oxygen level was critically low and there was fluid in his lungs.

An overwhelming diagnosis

Henry was transferred to the cardiovascular intensive care unit (CVICU) at the Children’s Minnesota hospital in Minneapolis for further testing. He was diagnosed with Hypoplastic Left Heart Syndrome (HLHS)—a rare form of congenital heart disease—which  meant the left side of his heart was severely underdeveloped.

“A child born with a heart condition was something we had never heard of before. It just felt like a tide of information,” said Stephanie. “You’re thrown into this world that you didn’t know existed, and you have this little life in front of you counting on you to make the best decisions for them—it’s a very heavy responsibility.”

A series of surgeries

Henry's parents looking over his bed in the hospital

The team from the Pediatric Cardiovascular Program at Children’s Minnesota told the family that Henry’s best option was open-heart surgery. Henry needed a series of three open-heart surgeries to reconstruct the heart and compensate for the otherwise-fatal defects.

Henry’s first surgery happened when he was just 12 days old. After two months in the hospital, Stephanie and Tyler were finally able to bring their son home. But, they knew they would be back.

Henry had his second surgery when he was 6 months old. “He rocked it,” said Stephanie.

Pandemic impact

Henry was scheduled to have his third open-heart surgery in March 2020. But, then the COVID-19 pandemic hit and all non-critical surgeries were postponed. Dr. David Overman, Chief of Cardiovascular Surgery, and the rest of Henry’s care team recommended waiting, explaining to the family that Henry’s health would not be at risk if the procedure was delayed.

Henry playing with a staff member wearing a face shield and mask

“This was challenging, mentally challenging. But, our trust was in the team and if they felt it was safest to wait, we waited,” said Stephanie.

Henry’s surgery was rescheduled for June. Stephanie admitted, with COVID-19, she was worried about going inside the hospital. However, she felt very safe after they arrived and saw everybody wearing face masks and other personal protective equipment (PPE).

Just a normal kid

Henry playing outside with a ballHenry stayed at Children’s Minnesota for two weeks after the third surgery. But now, a kid who couldn’t run for more than a few seconds has more energy than ever before. Surgery has been a game changer for Henry.

The series of surgeries are not a cure for HLHS. Henry will need lifelong care from a heart doctor who specializes in congenital heart disease. One day he may need a heart transplant.

“With a heart defect, you can’t tell anything is wrong from the outside. But, they’re battling inside. These kids will fight their entire lives,” said Stephanie.

Stephanie wrote a book for Henry before his third surgery. “Henry Has Heart Surgery” used age-appropriate language to walk him through what to expect. Stephanie has published the book to help other kids facing a major medical procedure. In it, she also recognizes the care the family received at Children’s Minnesota.

A team with heart

Throughout Henry’s journey, the family has trusted the team from Children’s Minnesota’s Cardiovascular Program. The family had no doubts about their expertise. But what convinced them that Henry was in the best hands possible was the personal connection they made with the family.

“We found comfort from our team at Children’s Minnesota. They were able to have tough conversations but also cry with us. They feel invested in Henry’s care and well-being. That made it easy to put our trust in them,” said Stephanie.

Henry’s care team will play Avengers with him at the bedside. To keep his development on track, Child Life specialists and music therapy have worked with Henry. When Henry was first admitted to the CVICU, a social worker at Children’s Minnesota urged Stephanie to go to an in-hospital support group for mothers. She said it was probably the greatest thing she could have done for herself during that difficult time.

“Henry and other kids with congenital heart diseases will be seen by cardiologists throughout their lives. Children’s Minnesota is dedicated to providing the best cardiovascular care from birth and into adulthood and offering the wrap around services like Child Life that set our program apart,” said Dr. Overman. “Community support is critical to be able to provide these essential services for children and their families at these very stressful moments.”

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