My wife, Tina, received a heart transplant in 1992 because of complications with Restrictive Cardiomyopathy. She is 22 ½ years post-transplant and doing well.
In 2002, before trying to get pregnant, we asked her cardiology team if her RCM could be transferred to our child. The answer was a definitive “No”. At that time, RCM was not known to be an inheritable condition.
The details of the day our son, Luke, was diagnosed with RCM will live in my memory as if that day was yesterday.
We would like to share that day with you.
November 17, 2010
Three months ago, during a regular checkup, Luke’s pediatrician heard a slight murmur when he listened to your heart. He said it was probably nothing, but to be cautious said we should follow up with a pediatric cardiologist. Mama’s cardiologist agreed with a follow-up, just to be sure.
Today is the day we go to the Hospital where you will have an EKG test performed. It’s a simple test with some electrical leads hooked up to your chest.
We strolled through the parking lot on this warm November day already talking about where we would go for lunch before taking you back to school. You were not nervous. We had reassured you many times that Mama’s heart condition was not something that could be passed on to you. The doctors confirmed this eight years ago before Mama got pregnant.
The nurse led you to the exam room where you cooperated while she attached the seven sticky leads to your chest. Mama and I both sat in the room, me obviously more anxious than her as shown by my constant fidgeting. I kept telling myself “there is nothing to worry about” because the doctors have always said that Mama’s Restrictive Cardiomyopathy was caused by a virus and couldn't be passed to her children.
After the EKG was complete, the nurse said, “I'm going to do another one just to make sure we had a good test.” I glanced over at the first report when it came out of the printer and the words “Hypertrophy of the Left Ventricle” jumped right out at me. My stomach sank. I sat quietly and said nothing to you or Mama. The nurse finished the second test, thanked you for your excellent behavior, took both test results and told us the doctor would be in to see us in a few minutes.
I still said nothing of the words I saw on the test results. Several minutes later the cardiologist came in. He informed us that the EKG was suspicious and they would like to do an ultrasound.
The ultrasound machine was new, so the setup took a while. We watched Johnny Test while we waited. The ultrasound took more than an hour and I hoped it was because the machine was new and unfamiliar, though I suspected the test took a long time because they found something they did not expect to see.
Following the ultrasound, the cardiologist hit us with the bad news: you have Restrictive Cardiomyopathy. Mama and I sat in shock and disbelief, our lives changed forever. And still the news got worse. The doctor then said, without hesitation or doubt, that you will need a heart transplant within two to three years. You are very bright and you fully understood everything he said. You immediately bawled. Mama wept and managed to get out the exact same phrase with the exact same shock and sadness I heard from her six months ago when Papi had a stroke: "This can't be happening!"
I felt as if every ounce of energy was drained from me at once. How did I not cry? I felt I needed to protect you from how scared I really am. How can I not show fear or pass out or have a panic attack? I have only one possible explanation: God put his arm around me and spoke to my heart saying everything was going to be OK.
You and I left the doctor’s office so Mama could speak with the doctor in private. When you finally settled down, you disclosed to me that your greatest fear is they are going to cut you open with a big scouting knife (we recently learned about knives in Cub Scouts). I did my best to reassure you that doctors are not always right and they do not use scouting knives on their patients.
Before leaving, the nurse set you up with a 24 hour heart monitor. If abnormal heartbeats are detected, a transplant could be even more urgent than initially thought. You were ok with the monitor and the variety of wires and patches connected to your chest because, as you said, “Daddy, I look like a robot.”
The drive home was very quiet. I was thinking of all the ways our lives would need to change. Less work, no travel, fewer extracurricular activities for you, maybe a move to New York City to be close to the hospital where the heart transplant would take place.
When we arrived home, we did not start calling family and friends, we did not post anything on Facebook. We kept to ourselves, still processing the information.
But something amazing happened as we sat there mindlessly watching cartoons, you playing with Pocket Pals on the coffee table. The world around us seemed to disintegrate. There were no thoughts of pending work or upcoming events on the family calendar. There were no worries about bills or anything financial.
Instead, we watched you play. We really watched you play and focused on just you, with no distracting thoughts. Both Mama and I were hanging on your every word, your every action, feeling our love for you like never before. Time seemed to stop, beautiful, peaceful. I wondered if this could be the way God loves and looks upon us, his children.
Evening crept right up and we did not even notice.
Then Mama said, “I suppose I should get something going for dinner.” Just like that we snapped back to reality. The worry, the concern, the unknown, all those thoughts came flooding back.
January 18, 2015
Luke is 11 years old now and other than getting winded when running with peers, he remains symptom free. We dream that a cure for RCM will be available to Luke before a heart transplant is needed.