By Jessica Palmer
Last November our family celebrated the seventh anniversary of our son Jack’s heart transplant. No emotion went untouched as we relived the tumultuous weeks surrounding his transplant. We grieved for the donor family while celebrating Jack’s second chance at life.
Jack, the eldest of our three boys, threw us into parenthood in a way that only another heart family could appreciate! He was born on October 10, 1998, after an uncomplicated pregnancy. Jack was two weeks late, and I think that he knew it was safer for him inside than out. It was not until Jack was nine days old, in the ER at BC Children’s Hospital, that we were told our “healthy” newborn had complex congenital heart disease and was in congestive heart failure. Jack was moved to the ICU where he underwent a coarctation repair and pulmonary artery banding. Although this temporarily stabilized Jack, his heart was very complicated and the doctors did not have a straightforward surgical plan as we would have liked. Three weeks later, Jack was readmitted with evidence of progressive failure. A heart catheterization was performed in an attempt to balloon the aortic valve. After an unsuccessful procedure, during which Jack suffered several infarcts, he was back in the ICU. A surgical repair was planned for the following day. But the next morning we were told that Jack’s heart was now inoperable. His only chance of survival was to have a heart transplant in Loma Linda University Children’s Hospital in California. There was no need for discussion between Brent and I, we were on the same page. This was Jack’s big chance. It was also his last chance and we absolutely had to try. I vividly remember the doctors (sitting on the mini Ikea stools), talking to us later that day in the ICU family room. They wanted to be sure that we fully comprehended the significant risk Jack faced by being transported to the California hospital in his extremely critical state. We understood and didn’t waver for a moment. Even if Jack died in that airplane, we knew we would always regret not taking the chance. Within two days, Jack was transported to Loma Linda. Without a doubt, it was the most important and the most terrifying journey of our lives.
Through the stormy November night, Jack’s failing heart triggered alarms with every bump along the way. It felt like we didn’t exhale the entire trip. Our relief when Jack finally entered the Loma Linda NICU was short-lived. The new doctors who greeted us said that Jack was likely too sick to survive the transplant surgery even if a heart became available in time. Although Jack hung in there day after day, his condition could not have been more critical. This horribly bloated and bruised baby no longer resembled our son. Soon we weren’t permitted to touch Jack or to talk to him for fear that it would increase the stress on his heart. We felt immense helplessness and frustration over our inability to help our baby. There was absolutely nothing that we could do for Jack except to sit beside him and pray that his blood pressure did not begin to drop. If it did, we knew that resuscitation was impossible. While Jack was waiting for a heart, we had an opportunity to see amazing kids of all ages in the heart transplant clinic. Although this gave me incredible hope for Jack’s future post transplant, it also saddened me because it was a glimpse of what Jack would not become if he didn’t get a heart in time.
On night six a heart became available. We went to bed overjoyed, believing that Jack would receive his new heart in the morning. However, an early call from the retrieval team brought devastating news once again: The heart was too big for Jack. I had a very difficult time accepting this, and my desperation led me to feel that if they didn’t use this heart, there would not be another. How could we possibly be fortunate enough to get a second heart in time? On night seven, a second heart did become available. But now Jack had become septic and could be removed from the transplant list. The decision lay in the hands of the infectious disease physicians. Thankfully, they felt there was time
to administer sufficient antibiotics to Jack before the transplant and he remained eligible. As he was wheeled off the next evening for the surgery, my feelings of relief and optimism superseded my fear. No matter what happened now, I was comforted knowing that Jack was getting “his chance.” The surgery was a success and at the age of seven weeks, Jack received the greatest gift that he would ever get. Despite a few bumps along the way, Jack’s recovery went well and he was discharged 40 days post-transplant. We remained in California for three more months for close monitoring by the transplant physicians. It was difficult to leave the comfort of these doctors who knew Jack so well but we were ecstatic to go home!
Today I am proud to say that Jack is one of those amazing kids like I saw in the Loma Linda heart clinic seven years ago. He is an interesting, thoughtful and enthusiastic boy who truly drinks life in. We are blessed that Jack is thriving and has had few difficulties along the way.
“Be an organ donor now!” That was Jack’s message at a public symposium during the 2006 Transplant Games, entitled “Kids Need Them Too.” We are eternally grateful to the donor family for Jack’s gift of life and we are honoured to show the world that organ donation works. So, please listen to Jack’s wise words and complete an organ donor registry card. There will be a day when no one will have to die waiting for an organ.
Donors can register online at www.transplant.bc.ca. ♥
Update: Today Jack is thriving as a teenager. He recently participated with the Gift of Life dragon boat team.