The Hard Thing

Father’s Day 2010

I think my father was surprised at being a father, especially of two boys. He completed medical school at Kansas University (KU) in 1954 in Pediatrics and Cardiology. He completed an internship at Wesley Hospital in Wichita, where brother Ed was born in late 1955. Then my father shipped out with his family to Japan to serve as a physician (Captain) in the Army for two years. I was born there at the end of his stint. He took a slew of photos in Japan. I think the place and the photographic culture agreed with him.

He came back to do his pediatric residency at the Methodist Hospital in Des Moines, finishing up in 1960. From Des Moines, he returned to KU where he did a cardiology fellowship. From there, he took his first position as a Pediatric Cardiologist at Indiana University Medical Center.

His first area of interest was in improving catheterization for infants. Catheterization is the practice of inserting one or more catheters through veins or arteries, and coursing them along inside the vein or artery until the catheter reaches the heart. Once there, a physician can evaluate the heart and its functioning, identifying defects in detail. A complete analysis can require six or more catheters.

At the time, catheters were not used until children were older than six months, and only one or two catheters at a time. Clearly, if a baby is born with a congenital heart defect, this is too late to be analyzing the problem, and they were only analyzing the survivors whose problems were obviously not overwhelmingly life-threatening.

My father and his colleagues pushed the envelope, my father taking the lead in using catheters in younger and younger babies, and increasing the number of catheters to get better diagnostic information. His treatment and care of children dramatically reduced the death rate among babies with congenital heart defects at Indiana University Medical Center. Soon he was working with children six weeks old, rather than six months old. Even so, only the strong and not terribly ill lasted the six weeks to come into the sphere of treatment.

But IU’s Pediatrics Department was dismantled in late 1960s, and he found his next role at USC’s Children’s Hospital in Los Angeles in 1967. The year was my own personal crucible – moving from the Midwest to Los Angeles (Hollywood, actually), and finding myself smack in the middle of a counterculture I hadn’t even known existed – but for my father, he continued to push the envelope and was soon using catheters to successfully treat newborns, just hours from the womb, saving tiny lives. Still, the attrition rate was high. Some heart defects could simply not be repaired.

In 1972, he took Loma Linda University up on an offer to lead their Pediatric Cardiology program. Loma Linda was another teaching university, and I think my father loved teaching as much or more than his role as physician. Loma Linda — we moved to Redlands just down the road — was out of LA, and with two teen-aged sons, Los Angeles was becoming one frightening parenting adventure after another. It also helped that Loma Linda promised him new facilities and a hand in their design.

Twenty years later, when he retired, the new facilities were dusty and unfulfilled promises, and the shine was definitely off the opportunity. It turned out that Loma Linda University presciently saw infant heart transplants as a lightning rod for media attention. My father, working with surgeon Len Bailey, provided them their lightning rod. Baby Fae was the first bolt.

Baby Fae was an infant born with hypoplastic left heart syndrome, a rare congenital heart defect in which the left side of the heart is severely underdeveloped on October 14, 1984. The Loma Linda team transplanted a baboon heart into her on October 26^th. A few hours later, the heart started beating on its own.

TIME magazine, in their November 12^th issue (http://www.time.com/time/magazine/article/0,9171,926947,00.html) reported that, “Last week, as television viewers got their first glimpse of the newborn known only as Baby Fae, it was her visibly heaving chest that stole the show. There was no mistaking the pulsations of life and no forgetting that the power source was the freshly implanted heart of a young baboon.

“One week after the historic transplant operation at Loma Linda University Medical Center in Southern California, the first infant—though not the first person—to receive a simian heart was reported to be doing remarkably well. “All vital signs are still good, and there’s no sign of rejection,” said Hospital Spokeswoman Patti Gentry, noting that Baby Fae was “just gulping down her formula.” Outside the hospital, there was wonder and excitement over this latest medical marvel, but the enthusiasm was dampened somewhat by controversy.”

The controversy was the response of antivivisectionists to the use of animal organs.

Twenty-one days after the surgery, Baby Fae succumbed to a kidney infection.

The media was enthralled. There were other babies to follow including Baby Moses and Baby Eve. As you can see, the treatment for a time took on Biblical proportions.

But there was another controversy underneath the hype.  Many of these babies died. And not because of their new hearts. Children with congenital heart defects don’t usually have just the one problem. Their bodies are often touched with a host of problems. The likelihood of a child surviving such a critical transplant was and remains extremely low. The stress on the families is immense. Most of the parents of these children divorced in the years immediately after the transplants.

There was another disturbing factor. The University, in their drive to keep themselves in the media eye, went looking for infants that might benefit from the surgery. This meant going to third world countries. Loma Linda paid for the families to come to the United States and receive treatment. But these families, like their ill children, had a host of other pressing issues. Taking on the care of an infant transplant patient was overwhelming. Care required daily logs, regular and consistent medication, thresholds of cleanliness. If chances of survival for a child in a health-care rich environment were low, chances for these children were nil.

My father never approved of transplants in infants. He found the media circus ridiculous and damaging. The mothers of these children sometimes lived at our home to avoid having them stay in an impersonal motel. But the University’s neonatal ambulance chasing wore on him and he retired as soon as he was able.

His legacy remains with the hundreds of individuals surviving today who would not have survived without his care, the thousands who are beneficiaries of his advancements in diagnosis and treatment.

While they were living in Los Angeles, my mother and father ate dinner one night at The Matador restaurant on Santa Monica Boulevard and found themselves at a Flamenco show. The acts were compelling and vibrant – this was a troupe straight outta Madrid – and they were enthralled. Between acts and during the intermission, a small-boned, slender man bantered with the audience from his table. Completely uncharacteristically, my parents bantered back.

That night, my brother and I, ten and twelve years of age, still very wet behind our Midwestern ears, were on our own at our home on Normandie Avenue. We finally called the LAPD at midnight. Our parents had never come home after nine. The LAPD desk sergeant told us to call back if they had not turned up in 48 hours.

They came home at 2:30 am, scolded us for being awake still – we were almost more terrified at these two strangers who came home – and then ushered us off to bed because some people were coming over. Some people turned out to be twenty or more strangers. They wore loud colors in combinations of skin-tight and flowing lines. They came from Spain, from Argentina, from Cuba. They laughed, they sang spontaneously, they played guitars, they clapped in that staccato flamenco style that creates kinetic stereo in your cerebrum, they danced, they drank, and they smoked.

I don’t recall going to sleep that night, but I do know a couple were still bright and cheery as coffee was being made and my brother and I scrounged breakfast.

That night was definitely the end of my childhood. Not because of what I saw or heard, but because my parents had (wisely, I think) found something much more interesting than rearing two ungrateful boys.

My mother’s memory of the night is different. She believes they came home late, after going to Nico’s house with the troupe, and sent us off to bed. Maybe I have conflated a series of events into a single cataclysm over the years. But understand, she had been drinking and we were completely sober.

The flamenco parties continued for years, and my parents took a few trips to Spain. They gave away brides at weddings, they helped old guitar players find work, and they meshed their surprised medical social square with the flamenco circle with amusing results. My father switched his guitar playing from corny folk ballads, probably learned to entertain his young sons, to flamenco.

When my father finally retired, he moved to Socorro, New Mexico where he spoke mostly Spanish and befriended old cowhands. He bought a hundred-plus year old adobe near downtown, studied local history, played guitar, and hiked.

He died in 2001.

I don’t think he and I ever saw eye-to-eye. It was an antagonism born into being a boy, I think, that we never rooted out. He didn’t name me Sue, but did the equivalent, which was ridicule and shame me most of my life. It wasn’t intentional or personal, it was just that my brother and I were babies and then children, stupid and clumsy in the way that boy children are – I scratched his car with my bike, I hit my brother in the head with a golf club (accidentally), I snipped our cat’s whiskers off with scissors. Then, before he knew it, we were disgruntled and opinionated teens, egged on by our peers to groundlessly question everything and even more groundlessly profess our dissatisfaction in the world. I don’t think, in our later years with him, that he ever quite felt that his sons were wonders, or in any way incredible. He continued to see us as a bit stupid, a bit clumsy, and doomed to some brand of failure, which in his favor, of course, we were.

The hard part in being a child, I think, is to understand the shape of the world you grow up in. Some of the constraints are real, some are just perceived, but real for your belief in them. As you age, you try to unravel who you are by trying to see that shape. A major factor is, of course, who was my father? Then, you become the man you thought you hated, because you respond to the demands of life in similar — maybe genetic –  ways.

Then you have children, and you realize that the hard part of being a child was not so hard at all. In fact it was no more than a boo-boo that a well-timed kiss and a band-aid would have swept away had anyone know you harbored such a wound. The hard thing is being a parent, and understanding that your own children will someday be asking the question, ‘Who was my father?’ and ‘Why am I the way I am because of that?’

My daughters, full and step, are incredible to me. I have immense trust in them and love what they do in this world. This is the gift of life and of parenting. I hope my father had some moments of that. I cherish mine.