Harper has been on life support – twice – had 4 open heart surgeries, 5 eye surgeries, countless therapy sessions and even more needle pokes, but not once has she let anything get the best of her. She’s overcome every obstacle in her own time.
At birth, Harper’s parents were surprised to learn she had Down syndrome, but it was her heart defect, atrioventricular canal defect, that caused them worry. The hole in her heart caused her difficulty with feeding and lung congestion, but the cardiologist wanted to wait until she was older and stronger to repair the defect.
Harper’s mom also noticed a milky-white hue to her newborn’s eyes. The day after she was born, the vision center confirmed Harper had cataracts that were so big she could only see light. Dr. Hanna removed the cataracts and placed her with contact lenses to help Harper’s brain learn to see things correctly.
At 2 months old, Harper’s parents came to the ER after Harper wasn’t eating and her breathing sounded off. Upon taking her vitals, it was clear Harper was going into congestive heart failure. She was rushed to the PICU where she was intubated, put on life support and would remain hospitalized for nearly 60 days.
At 3 months old, Harper needed her first open heart surgery. Afterward, she still had extreme pulmonary hypertension so she went home hooked to an oxygen machine to help her lungs function. She was also struggling to eat so was later fitted with a feeding tube to ensure fluids didn’t get in her lungs.
Over the next year, Harper had more surgeries on her eyes and heart, visits to the PICU and removal of her tonsils and adenoids to help with sleep.
To assist with Harper’s around-the-clock care, home care nurses became an extension of the family. In the midst of Harper’s extraordinary medical journey, her dad, a sergeant in the National Guard, was deployed to Kuwait.
“We knew there was a chance he’d have to go, but we also thought her big surgeries were behind her,” said Tonya, Harper’s mom. “So much happened that spring and summer with Harper’s health…They say it takes a village to raise a child and thankfully our village of doctors, nurses, therapists, family and friends were awesome…and they still are.”