I’ve mentioned our son, John Michael, a couple of times in this blog. Except for close friends or relatives, none of you know much about him beyond what I have written here. Today I've decided to share a little bit about him with you for reasons that will become apparent by the time you get to the end of this entry.
John is exceedingly bright – Mensa material in fact. He is good-natured, cooperative, loving, and polite. All of which are interesting if for no other reason he will be seventeen this fall. He is not much for the outdoors or sports, preferring to read, play the piano, or spend time on his computer in his spare time.
A bright, nice teen. So what?
I have had two surreal experiences in my life. The first was as I walked among a collection of caskets, trying to decide which one to bury my father in. The second, on the morning of October 18th, 1992, as Pat and I sat in a small room just off the neonatal intensive care unit of Georgetown University Medical Center listening to the head of pediatric cardiology explain that our son, John Michael, had just been born with a series of congenital anomalies in his heart – hypoplastic right-heart syndrome, transposition of the arteries, and an enlarged ductus to name a few. They were, in a word, fatal conditions and, she patiently explained, there was no viable treatment available given his multiple problems.
When I inquired about a heart transplant, she shook her head and replied solemnly, “They just don’t work in babies. The odds of getting a heart are maybe one in five, and the odds of a transplant working about the same. Then, if you are among the lucky few, he’ll have to be on very strong medicine for the rest of his life…unable to go to school, have friends, or live what we would otherwise consider a normal life.”
The verdict was crushing. Fortunately for John Michael however, he has two very stubborn, and pathologically driven, parents. After the initial shock, and a good deal of soul searching, Pat and I embarked on a research project…relying on our memories, local libraries, contacts in the medical profession, and a degree of anal retentiveness that can only come from being potty-trained at gunpoint. (This all was, please notice, prior to the WWW and Google.)
One contact we lucked upon was Jay Fricker, then head of the pediatric transplant program at the University of Pittsburgh. His comments largely confirmed what we had been told at Georgetown. Dr. Fricker even went so far as to add that if it were his child, he probably wouldn’t “put him or me through it”. Devastated, I began saying goodbye, then paused.
“Well, If you were to try for a transplant for a child, where would you go?” I asked.
“Oh hell”, he said without hesitation, “to Loma Linda, out in California, they’ve done over a hundred of those things.”
My next phone call, to Loma Linda, was an eye-opener. They had done over 140 transplants in babies, 85% lived past their first birthday and 75% past their fifth. When I asked what the life expectancy for the children was, Kay Ogata of Loma Linda said frankly, “We don’t know. But our first transplant just started second grade.”
“Second grade….you mean he goes to school?” I asked.
“Oh yeah”, she replied, “our kids go to school, play on the playground, eat dirt…everything other kids can do.”
Three days later a jet ambulance from California touched down at National Airport in D.C., and flew John back to Loma Linda. There, five weeks later…at the age of six weeks…John Michael received the heart of a little girl who had been killed in an auto accident in Minnesota.
It hasn’t all been a bed of roses mind you…he has had a “minor” brush with a form of lymphatic cancer, and did have to be hospitalized for a few days when he came down with chicken pox. And of course there are the quarterly checkups, blood draws, and the like, but…there have been no rejections and no serious side effects to date. He is an A student, plays several instruments, and studies French and Spanish. Oh, and did I mention…Mom and Dad are incredibly proud of both his accomplishments and the dignity with which he has born his burden of daily meds, the medical fiddling, and the like?
So what’s the point I mentioned in the beginning? Just this…
John Michael isn’t with us today because of stubborn parents, loving nurses, or highly skilled surgeons…even though all certainly played a role. John Michael is here today because in a small city in Minnesota a young couple, faced with a tragedy most of us can’t even imagine, found the courage and generosity to reach out to another set of parents a half a continent away and make their lives immeasurably brighter.
Leonard Bailey, who performed the first successful infant transplant in 1981, has written, “It is tragedy enough when one child dies, without two or three more dying unnecessarily.”
That’s the point. Twenty or so folks will die today because the donor they so desperately waited for has not materialized. Have you signed a donor card? Have you told your loved ones your wish to donate your organs if the unthinkable should happen?
Too busy? Still thinking that maybe it’s not all that important? Please, stop by our place anytime…there’s someone very special I’d like you to meet.