Our Son, Ledger Whisenand, was born 8/27/2018 with a diagnosis of Hypoplastic Left Heart Syndrome. There is no cure for HLHS, only three reconstructive surgeries– the Norwood, Glenn and Fontan procedures. He had his first open heart surgery, his Norwood, on 9/13/2018. Ledger was not oxygenating well. They had to clamp the first shunt placed and place a whole new shunt, basically repeating the Norwood procedure 5 days later. His third open heart surgery, his Glenn, was on February 28th, 2019 without any complications. On April 13, 2022, Ledger had his last planned surgery, his Fontan. What we anticipated to be a 7–10 day hospital stay turned into a very long 115 days with multiple complications. Ledger continued to have recurrent pleural effusions where he had undergone multiple chest tube placements and interventions to decrease the fluid accumulation. He fought three major infections including an infection in his heart and blood. He survived multiple blood clots and even a stroke. We questioned if his Fontan was failing but the physical and clinical data were not adding up. I can’t count the number of times I had wished we were “Pre-Fontan” when our lives seemed normal.
By the grace of God, Ledger was able to come home on August 4th, 2022! We continued to live our lives to the fullest and praise God for every single miracle performed in our child. We thank him for the lives that are continually changed by our son’s testimony. In May of 2023, Ledger began to require higher doses of his diuretics because of increased fluid. On June 9th, 2023, Ledger became very sick and lethargic so we rushed him to the emergency room at Cardinal Glennon. He had a large left sided pleural effusion. During this 16-day hospital admission, Ledger was diagnosed with protein losing enteropathy (PLE). In some cases, protein losing enteropathy can be treated with high dose steroids. We discussed with his medical team how his Fontan was failing but hasn’t failed yet.
On October 3rd, Ledger was admitted for low albumin levels. Unfortunately, the steroids were not helping treat his PLE. We always knew transplant would be a possibility. We didn’t expect to be staring it right in the face today. This week. Honestly, even this year. I know there is purpose in the pain and that God’s plan doesn’t have to match mine for it to still be good. Do I want healing … absolutely. But I also know that my version of healing and God’s version may not totally add up. And when I pray for healing. I literally pray … YOUR WILL. Because where there is not physical healing of Ledger YET, there is so much spiritual healing of so many people around us.
Ledger is currently inpatient awaiting his transplant. Receiving a heart transplant is heavy. Another family has to endure an unthinkable tragedy. We continue to pray for all organ donors and families, as it is a true gift of life.
We have partnered with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses, Please consider donating to COTA in honor of Ledger.
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is a nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients help meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.