Prologue: Heart, Interrupted
Batter my heart, three person'd God; for, you
As yet but knocke, breathe, shine, and seeke to mend;
That I may rise, and stand, o'erthrowmee,'and bend
Your force, to breake, blowe, burn and make me new
“Dad, something is wrong with Eddie!”
Our teenage son was the first to notice three year-old Eddie lying motionless on the kitchen floor and instinctively picked up his lifeless body. As I then took him in my arms and moved him onto the floor in the family room, I remember thinking that he seemed oddly heavy, and the term deadweight felt sickeningly appropriate. My wife dialed 911, I began CPR, and in an instant, our lives were turned upside down.
That was Sunday night, January 8, 2012. My wife and I, along with our five children, just sat down to discuss our vacation plans for the new year, when Eddie, our youngest, experienced what we later learned was an aborted sudden cardiac death, most likely triggered by a potentially fatal heart arrhythmia. He was lucky. He collapsed in front of us and we reacted quickly. CPR probably saved his life. The paramedics arrived in less than four minutes and stabilized him before rushing him to the emergency room.
The ER doctors thought it was a neurological event, perhaps an epileptic seizure. No one believed that his heart had actually stopped, that just doesn’t happen to a three year-old. Our pediatrician, a bit less skeptical, thought it would be good to meet with a cardiologist, just in case.
So on Tuesday, January 24, we made the trek across Lake Washington to Seattle Children’s Hospital for what we thought would be a routine appointment. Ninety minutes later, we had a diagnosis and only one treatment option. “There is no doubt,” said the three Heart Failure and Cardiac Transplantation specialiststhat were suddenly in our exam room, “that Eddie will need a heart transplant. We’re sorry. We know this must be a lot to take in.”
Officially, Eddie’s diagnosis was restrictive cardiomyopathy (RCM), an extremely rare heart condition in which the walls of theleft ventricle become rigid and consequently fail to relax and fill properly with blood. As a result, blood backs up into the left atrium and, ultimately, into the pulmonary arteries leading to pulmonary hypertension and heart failure. There is no long-term treatment other than transplantation. Without transplantation, average life expectancy after diagnosis is one to two years.
The following week saw Eddie admitted to the hospital for a cardiac catheterization procedure and to implant a defibrillator which would protect him from arrhythmia at home while we waited for a new heart. Looking back now, it all seems so simple and straightforward. The plan was that we’d get a call from the transplant team telling us a heart was available and we’d drive Eddie to the hospital for surgery. Another three weeks for post-operative recovery and we’d head home again. Of course, that would have been too easy . . . we never could have anticipated what was coming next.
Two weeks after leaving the hospital, Eddie’s name was officially added to the National Organ Transplant waiting list with the highest possible priority. We were told, on average, the wait for a heart for a three year-old in Eddie’s condition would be between two and six months. That didn’t sound so bad since Eddie seemed to be relatively healthy otherwise and we thought we could take advantage of these few months to enjoy him as he was. While difficult, we felt strong enough to lead our family through this new trial.
Two short weeks later, on Tuesday, March 6, we woke up to find an unexpected blanket of snow on the ground. Schools were on two-hour delay and, as a result, all of us were at home when Eddie suddenly told us he felt sick. He was struggling to breathe and his skin had instantaneously turned gray. Without hesitation, we called 911 and worked to keep Eddie conscious until the paramedics could arrive.
Not again. Not like this. Please save our boy.
My wife went with Eddie in the ambulance and she called shortly before they arrived at the hospital. “He threw up, but he seems to be doing better.” Did we overreact? Was this an immediate answer to our earnest, if hurried prayers? Brief hope. She called back ten minutes later. “You need to get here quickly . . . something is wrong.” Horribly wrong it turns out . . . Eddie went into cardiac arrest five minutes after the ambulance reached the emergency room.
The supplicant in John Donne’s Holy Sonnet XIV sought spiritual strength through adversity, trial, and chastisement rather than through quiet supplication and reflection alone. Like Lehi in the Book of Mormon, he understood that there “must needs be . . . an opposition in all things” and he subsequently pleaded for God to “o’erthrow” his defenses and “breake, blowe, [and] burn” him. Renewal and forgiveness, he believed, only come after being “chosen . . . in the furnace of affliction.”
Two hundred years later, and shortly after the miraculous events that took place at the Kirtland Temple dedication, Joseph Smith told the spiritually inexperienced members of the Quorum of the Twelve that “[y]ou will have all kinds of trials to pass through. And it is quite as necessary for you to be tried as it was for Abraham and other men of God, and . . .God will feel after you, and He will take hold of you and wrench your very heart strings, and if you cannot stand it you will not be fit for an inheritance in the Celestial Kingdom of God.”
I believe in overcoming adversity, of course. We are stronger, more humble, and more empathetic toward others and their trials when we do. However, while I may bang my head against the wall from time to time because it feels good to stop, I don’t make a habit of praying for trials and heartbreak. I have pondered the sacrifice required of Abraham, offering up his miraculous son, Isaac, in spite of the fact that it was to be through Isaac that God’s covenant with Abraham was to be fulfilled. Would I be strong enough to endure similar trials? And what would I learn from them?
Now Eddie was slipping away from us . . . a Code Blue was called from the ER. His heart stopped and we needed a miracle.
Tender Mercies: A God of Miracles
O then despise not, and wonder not, but hearken unto the words of the Lord, and ask the Father in the name of Jesus for what things soever ye shall stand in need.