I'm not LDS.
It's not that I lack faith or embrace the Seven Deadly Sins, or anything.
But I prefer giving alms in a more casual manner than practiced by the Latter-day Saints. And do without caffeine? No. Never. Not me.
Nonetheless I found myself a couple of weeks ago reading a back issue of Meridian magazine, an on-line publication of the Church of Jesus Christ of Latter-day Saints.
The story was about a three-year-old boy, named Eddie, who needed a heart transplant.
The boy had lived a normal life for a three-year-old up until a Sunday night in January of this year. The family of seven was seated together discussing vacation plans for later in the summer, when the teenage son said, "Dad, something is wrong with Eddie!”
The child had collapsed on the kitchen floor. His father picked him up and carried his seemingly lifeless body into the family room where he began CPR, while his mother desperately dialed 911.
That CPR probably saved his life, although the paramedics arrived within four eternal minutes and rushed him to the emergency room after stabilizing his vital signs. The ER doctors presumed it was an epileptic seizure: it couldn't be a problem with his heart. He was only 3.
But the family's pediatrician was skeptical of that diagnosis and suggested the boy see a cardiologist.
An appointment was made at the nearby Seattle Children's Hospital. Three specialists in heart failure and cardiac transplantation examined the youngster and diagnosed him with restrictive cardiomyopathy (RCM).
That's a rare heart condition. The walls of the left ventricle become rigid and fail to relax. They no longer fill properly with blood. So the blood backs up into the left atrium and, finally, into the pulmonary arteries themselves. That leads to pulmonary hypertension and heart failure. A patient with RCM has one to two years of life remaining, at best -- unless there's a heart transplant.
Two weeks after the diagnosis, Eddie's name was added to the National Organ Transplant waiting list. He was given the highest possible priority. Doctors told the family, the wait for a three-year-old in Eddie's condition to get a new heart was typically two to six months. They had no choice except to wait and pray.
Eddie recovered enough to be released and the family took him home.
In early March, however, Eddie told his parents he felt sick. He was struggling to breathe and his skin was ashen. The paramedics again arrived and rushed him to the hospital. He threw up in the ambulance, but seemed to be doing better. But five minutes after reaching the ER, Eddie went into full cardiac arrest.
Three exploratory heart surgeries later, the director of the cardiac ICU told the family the boy should have died on the operating table. During the surgery, a large clot was released in his right ventricle, causing a pulmonary embolism. The doctor told the family the clot was so large it should have been fatal. But instead, it simply disappeared.
The family couldn't help but see it as a miracle. But Eddie would need more miracles to survive. And finding a heart donor would top that list.
The struggle facing families like Eddie’s isn’t unique. The problem is there are far more people needing an organ transplant than there are organs available.
According to Donate Life America, a national organization dedicated to increasing the number of registered organ, eye and tissue donors, in order for an organ to be used for transplantation, it must have blood and oxygen passing through it until the time surgeons remove it.
This means the host must have died due an irreparable neurological injury. That usually only happens when death is caused by a massive brain trauma, such as an aneurysm, stroke or automobile accident.
And only after every conceivable effort has been made to save the host’s life and exhaustive tests performed to confirm the absence of brain or brain stem activity can the host be declared brain dead and a donation made possible.
That doesn’t happen automatically of course. Donate Life notes that doctors must search the state’s organ registry to learn if the patient has personally consented to a donation. If not, the physicians can consult with a responsible family member to authorize a donation.
That doesn’t happen often enough.
And even when it does it’s just the start. The family is asked to provide a medical and social history. Then donation professionals decide which organs can be transplanted and to which patients on the national transplant waiting list qualify to receive them.
Donate for Life notes that in 2011 there were 113,115 patients awaiting various organ or tissue transplants. But only 28,535 organ transplants were performed. And there were just 14,144 organ donors that year.
And among those 113,115 waiting patients, there were 1,801 pediatric patients like Eddie.
Facebook CEO Mark Zuckerberg’s plan to take his company public on May 18 and the following excitement and controversy, eclipsed something else he did that may prove far more important.
Zuckerberg announced on April 30 that Facebook is partnering with Donate Life America to raise the awareness of the need for organ and tissue donors and make it easier for Facebook’s 900 million users to join the registry.
Donate for Life notes that, as of last year, only about 43 percent of adults in the U.S. have signed up to be an organ donor. That’s frequently done through the state’s department of motor vehicles and their status as organ donors is listed on their driver’s license.
Facebook now allows its users in the US and UK to post their donor status on their timeline page. And a link to Donate Life’s national registry is included. It’s www.facebook.com/DonateLife.
The article in Meridian magazine was published weeks before Zuckerberg’s announcement and didn’t go beyond the family’s desperate, unfulfilled search for a heart. But the story continued anyway.
At 7:11 a.m. the morning after Zuckerberg’s announcement, Eddie’s transplant team reported they had received a heart.
“Can't deny I love Mark Zuckerberg for doing this,” Eddie’s father wrote in his blog. “…may become a fan yet!”