For One Mom, a Heart Transplant Redefines the Gift of Life
Advocacy A heart transplant gave her infant a second chance. Today, Marnie Blakey reflects on how receiving that heart shapes every day of her life.
What was your first thought when the doctors told you that Mitchell had dilated cardiomyopathy?
Marnie Blakey: Complete shock and disbelief. I remember the first words I said to my husband were, “Our lives just changed forever.” I knew from that moment forward — not knowing anything about Mitchell's prognosis or what was to come — that having a child with complex medical needs is a life-changing event that affects every person in the family.
At the time of Mitchell's diagnosis, we learned that he had a 1 in 3 chance of complete recovery, a 1 in 3 chance of partial recovery, which would require medications and possible future complications, and a 1 in 3 chance of death or needing a heart transplant. Our pediatric cardiologist told us from the beginning that Mitchell's heart looked very sick and he didn't think he would recover, but we held on to hope and the statistics that were in our favor.
How did you prepare yourselves, knowing your child would have to undergo a serious surgery at such a young age?
MB: Nothing could have prepared us for the path that Mitchell's hospitalization took. We went from feeling positive and hopeful for his recovery to despair and desperation that he would receive a heart before he died. At first, we could not imagine him enduring transplant surgery and all the potential complications that would follow, not to mention the list of 8 to 10 medications he would need to take on a daily basis. Towards the end, we could not have hoped for anything else, since we were watching him die and knew he was not ever leaving the hospital unless he received a new heart.
What was it like waiting to find a potential match for Mitchell?
MB: The wait was torture, a pure torture I would never wish on any parent. Watching your child slowly die and having no control over the outcome brought our family to deep and dark feelings of despair. We knew he had a 1 in 3 chance of dying while waiting for a heart — a statistic I believe holds true for all patients waiting for a life saving organ. We struggled with our own internal conflicts, since we knew a life-saving heart for our child meant another parent had to suffer the most horrific loss.
Have you explained this experience to Mitchell yet?
MB: Mitchell knows he has another child's heart in his body, and we have been very factual about his procedure and why he takes his medications every day. At age 10, I don't think he fully grasps the implications that he received a treatment and not a cure. We of course did not get any guarantees that he would live with his new heart like a normal kid with a normal life. He's just a boy, and interested in all boy things. And we are happy to nurture that innocence for now.
What has the post-transplant management process been like?
MB: Mitchell has adjusted to an almost completely normal life. On one hand, he takes medication daily, gets a bit more sick and more often than other kids his age, and goes for regular checkups and procedures, like echocardiograms and heart catheterizations. On the other hand, he attends public school, plays with his friends and participates in Little League baseball and taekwondo. He's been water skiing, snow skiing and zip-lining. He's been to Disneyland, Knott's Berry Farm and Universal Studies. It's pretty awesome to be Mitchell.
What are some of the most memorable moments that you never thought you would experience?
MB: There have been many emotional experiences watching Mitchell meet various milestones in his life, such as his first words and first steps — milestones that felt even more meaningful to us, since we knew we were so close to never having them. Two memories in particular stick out in my mind.
First, Mitchell's first day of kindergarten. I think every parent reacts emotionally when their child heads to school that day, the first day they are entering a new life that becomes their own and never turns back. For us, that first day of kindergarten, about four years after his transplant, meant that he was living life — like a normal kid — and that we were pretty much a normal family. I think that was one of the first days I actually took a deep breath and felt peace and happiness since his transplant. I just felt on that day that he was finally okay.
“The donor family suffered an unimaginable loss and our family was saved. I don't think we could put that in words.”
Another incredible memory we have was recently, when Mitchell received his third degree black belt in Taekwondo. After six years of training, hard work and dedication, Mitchell earned his belt, which was engraved with his both name and the word “perseverance.” I don't think there could be a better word to describe him. He has been through a lot for a 10-year-old kid. He has an incredible spirit, a positive attitude and innate drive to succeed. He has a bright future ahead, and I can't wait to see what Mitchell's future holds next.
What would you say to the donor’s family if you had the opportunity?
MB: Thinking about Mitchell's donor family brings tears to my eyes. If we had the opportunity to communicate with them, we would share in their grief for their incredible loss. I would not know how to express our gratefulness in the gift they gave us, truly the gift of life. The donor family suffered an unimaginable loss and our family was saved. I don't think we could put that in words.
I don't know if they would feel any comfort, seeing another child live and thrive because of their gift. I only know that we have the deepest gratitude for what they did for our family.