By Kim Soper
My son Jack was born with hypoplastic left heart syndrome (HLHS), a congenital heart defect where the left half of his heart didn’t develop normally when he was in the womb. At just two days old he began showing symptoms and was rushed to Boston Children’s Hospital’s Cardiac Intensive Care Unit. Less than a week later he had his first major heart operation, but his recovery was complicated, and he needed to be placed on Extracorporeal Membrane Oxygenation (ECMO) to heal. (ECMO is an advanced technology that does the work of a person’s lungs and heart for them.) Over the next few months Jack continued to have growth and heart complications, as well as surgeries, but nothing offered a permanent solution.
When it became clear that there were no other options, we spoke with the team at the Pediatric Transplant Center about a heart transplant for Jack. With the details arranged, Jack was placed on the national donor list. We were hopeful that Jack’s new heart would be found soon, but it was never far from my mind that for Jack to get a new heart meant someone had to lose his or her child.
Three weeks after being placed on the list, Jack received his new heart. The operation went smoothly, but there were again complications after surgery. Jack was placed back on ECMO and was monitored by Boston Children’s staff to check his progress. Less than a week later he was taken off ECMO and began to look better.
The following month Jack had plasmapheresis (a procedure where a person is connected to a machine that processes the blood) to reduce the number antibodies in his system and lower his risk for humoral rejection. Then, after months of weaning down on medications and ventilator support, and being placed on peritoneal dialysis for complications with his kidneys, Jack was finally discharged and ready to come home.
It’s a strange feeling leaving the hospital after ten months. On one hand you’re beyond excited to be going home, but also anxious about not having that 24-hour care and support. The staff at Boston Children’s played a pivotal role in our ability to keep well-balanced both during, and after, our prolonged stay. We are so grateful for their seemingly endless expertise, kindness and support.
When we finally did get home, we brought with us an arsenal of medical and home nursing equipment. Slowly but surely, Jack weaned off the dialysis after a couple of months. He also built up his endurance to be off the ventilator during the day, and with time, he was off it completely. When we travel now, I’m amazed at how much easier it is; we used to need a nurse to help us pack up the car to go to doctor appointments!
Jack was set up with programs to support his development when he left the hospital, and continues to receive physical, occupational and speech therapy. He has developmental delays that require extra support at school, but he goes to Kindergarten every day, and makes progress each year.
Having a child with a transplant and other chronic medical needs is challenging, but it’s also a blessing. I appreciate every day I have with Jack, and he definitely has made a huge impact on anyone who’s met him. Without the gift of organ donation, and access to the best medical care, Jack would not be here today.