Jackson was born on Easter Sunday, 2001. We brought our perfect 8lb 6oz baby home from the hospital and enjoyed two days with our new little one. All seemed well; Jack was a wonderful, healthy baby. At least that’s how it appeared when we were discharged from the hospital.
Things went well for the first several days at home. However, on the evening of his fifth day of life he felt cool to the touch, became fussy and wouldn’t nurse. I knew something was wrong when he began making a funny noise with every exhale. Jack wasn’t improving, so I woke my husband Jason and we decided we needed to take Jack immediately to the emergency room. Never could we fathom the journey we were about to embark upon. A journey that would last, not just days, but years, and now we know, the rest of his and our lives…
After several minutes of trying to save our baby, they told us his heart was severely compromised and asked if we wanted pastoral care, obviously insinuating they believed our child could die. At that moment we realized it was very serious. He was baptized in the emergency room right before the transport team came to take him to Children’s Hospital of Wisconsin.
There, we were told he had a very complex congenital heart defect; Hypoplastic Left Heart Syndrome. This meant his left ventricle was severely underdeveloped. He would need several open heart surgeries to reconstruct his heart. Because he had such severe physical trauma when he was just five days old, his organs needed time to recover. This created such intense instability in Jack that they had to prolong the life-saving heart reconstruction surgery until he got stronger.
We were overwhelmed with this news, with equipment, monitors, tubes and lines. It is a life no parent should have to go through, but it was now our life. The hardest thing as a parent to accept was they couldn’t just “fix” him and he would be fine; he would have to deal with this his entire life. Finally, at ten days old, Jack was ready for the first stage of reconstruction. He recovered well and successfully had all three reconstructive operations by the time he was three years old. While each surgery was a struggle for our little boy, he triumphed through each one and became stronger. Other than daily medications and bi-annual cardiology visits, Jack lived a very normal life for the next 8 years. Most people were surprised to know he had congenital heart disease let alone a very complex, life-threatening one. While Jack was restricted physically (i.e. he couldn’t play tackle sports and fatigued seemingly earlier than other children), he excelled at school socially and academically.
Eleven years later our life was again to become a roller coaster. At a routine clinic visit, we were told there was a change in his echo and that Jack’s heart was failing. He didn’t really have any symptoms of heart failure so once again; this came as a complete shock to us all. The news was much harder to process, accept, and adapt to this time because we had an eleven year old who was very aware of what was going on. At lunch after that visit he asked us if he was going to die and also what percentage there was that he could die. It took everything in me not to scream and sob to answer his questions. From that appointment on, Jack’s deterioration was rapid, as his heart was failing quite quickly. Within a month we were admitted to the Cardiac Intensive Care Unit (CICU) at Children’s Hospital of Wisconsin. A few days later, they told us he would most likely need a heart transplant. He was put on the heart transplant list shortly thereafter.
Every day in the CICU I watched him getting weaker. I was afraid he would over exert himself doing simple daily tasks like walking, showering or eating. After one tough day, I admitted to myself that maybe it wasn’t God’s plan for him to make it through this. I was watching him fade away. Every time I looked at him I would try to memorize his expressions, his smile, his hands and the sound of his laugh…everything about him. Preparing myself that memories might be all I would have.
After two months of trying different medications and therapies, Jack continued to deteriorate physically. Mentally however, he was as sharp as ever. He was well aware of what medications he needed, always had questions for the doctors and kept up on his homework. However, it was eventually decided that Jack needed more support for his failing heart. The physicians caring for Jack decided to place a Heartware Ventricular Assist Device (HVAD) in him. The HVAD is a mechanical pump implanted in the heart to help blood flow in people with weakened hearts. This device was necessary to bridge the time until a donor heart was available. He was the first single ventricle child in the United States to have this device and second in the world. It was terrifying to know this was the first time they were placing this device in a child with Jack’s physiology, but there was no other choice. We had to place Jack in the best position possible to accept a new heart when one became available.
Jack successfully had the HVAD placed on December 23rd. He was slowly recovering from surgery when we were informed that a donor heart was available for him. He was so excited that he cried. All he wanted was a normal life and this was his ticket home. Shortly thereafter, we received horrible news—it was too risky for Jack to take that heart because he had developed a large amount of antigens during surgery. The hardest part was delivering that news to a little boy that just wanted to go home. He was devastated. The
emotional blow was overwhelming.
The next day, they began therapies to try and lower his antigen levels. As Jack continued to recovered they began talking about sending him home on the VAD–another first. After two months in the CICU with the device, Jack was able to come home. We cared for him at home and had frequent visits to the hospital for immunosuppression therapy and clinic. Jack thrived being home; he gained weight, grew taller, and eventually went back to school. Three months after he was discharged from the hospital we received a call that there was heart for Jack. I reluctantly asked how likely we were to accept this heart and was told it was a negative cross match (a perfect match). On May 20th Jack received his heart and went home eleven days later. He is doing great and even joined the basketball team, something he was unable to do before.
Life in our home has returned to normal. A “new normal” where Jack is able to function better than he ever has. Although he will be on medication for the rest of his life, and we now live at a bit of “heightened” sensitivity or awareness as we adapted to Jack living with a new heart, we are thankful every single day for every single breath he takes.