Fighter Friday - Harper
Tell us about yourself or your fighter: Harper Hope Sheckler was born on July 8th, 2022 at Children's Hospital Colorado. We found out about her special heart during our 20 week anatomy scan when we were told "there's something wrong with her heart". We left that day in devastation with lots of unknowns. We were sent to a high risk OB who discovered she also had situs inversus or heterotaxy (organs on the opposite side of her body). Apparently people live with situs inversus and do not even know they have it so it wasn't a huge concern for her team but very scary for us.
It was determined she had HLHS and would likely undergo the 3 palliative surgeries in early childhood. After she was born, we did genetic testing that determined Harper had an extremely rare genetic disorder called Primary Ciliary Dyskinesia (PCD), a condition similar to cystic fibrosis. This condition likely caused all of her abnormalities and affects her lungs as well as she is unable to remove secretions on her own. Due to this, we have to perform chest physiotherapy and breathing treatments every morning and night.
Harper was lucky in that she didn't need the Norwood surgery but they were able to put a sent in at 5 days old. We were then told she would not be eligible for the Glenn as her pulmonary pressures were too high and her heart may not sustain the surgery. After being put on a new medicine to lower the pressures, they determined she was now eligible and got her Glenn in March of 2023. (Thank you, God!)
She has since started preschool and is thriving! She's a smart, hilarious little girl, a wonderful sister and we adore her. We are awaiting her 3rd surgery (Fontan) which will likely be in the Summer of 2025.
Can you share a memorable moment that embodies your child's bravery and fighting spirit?: We were expecting a very hard, long recovery after her Glenn procedure but she showed us how tough and brave she is by recovering quickly and being discharged in just 8 days! It was exactly what her little heart needed.