Johnny was not supposed to live as long as he did.
The day Johnny was born, Larry and friends hung a huge banner across the upstairs front of the restaurant proclaiming "IT'S A BOY!"
The day he was diagnosed with hypoplastic left heart syndrome (his left ventricle - the heart chamber that pumps oxygenated blood to the body - never formed; it was missing) the folks at Children's Hospital in DC assigned to hold distraught parents' emotions and hands provided a booklet on newborn heart maladies. The one page devoted to hypoplastic left heart syndrome, actually one paragraph, said, in effect, very little can be done. Take the infant home and make him/her as comfortable as possible. The end can be expected within four months. There was absolutely nothing comforting about that.
The banner at the restaurant came down that day.
Hypoplastic left heart babies, like Johnny, live a short while without medical intervention because God provided the fetal heart with an interesting little "tube" called the ductus areteriosus. Yes I said God because any idiot who believes in the chaos theory or any other such nonsense never studied science or the intricacies of life at any stage. The ductus areteriosus allows blood to flow around the fetal lungs. After birth when the lungs start receiving air, the ductus shuts down. It's not needed. In Johnny's case, as long as it remained open his body didn't notice the problem with his heart. Ironically a ductus that remains open (patent ductus arteriosus - where "patent" means "open") is a problem that needs medical attention to close it.
Johnny's ductus arteriosus was quite normal and started to close his first day home. I was working at my family's restaurant. When I arrived home, he was very very pale with shallow breathing and quite listless. The emergency advice from the HMO said to bring him to their facility at 19th and Pennsylvania Avenue NW near George Washington Hospital. That was about 20-25 minutes away. The drive led past Children's Hospital. At the entrance to Children's Emergency room, I made a fast right and pulled up to the door. His mother took him in and I drove off to park the car.
As I walked into the lobby entrance, people were running from every direction. They were running to save Johnny's life.
I learned years later that the concept of six levels of separation or however that goes is all too correct. In the emergency room at that time was the MD sister of a good friend who was visiting the cardiologist assigned to Johnny. The two sisters are cousins of my best friend from grade school, Kevin Callahan. The sister I knew from Kevin's wedding dated the cardiologist years before. The sisters' dad was at the time the head of pediatrics at Harvard Medical School.
Johnny had been literally drowning in his own blood. When the ductus shut down, the blood just started flowing into his lungs with no way to get to the missing ventricle where it was supposed to be pumped, fresh with oxygen, throughout his body. His veins had collapsed so badly that the docs working on him kept slashing at his ankles to gain entry to replace the precious fluid. They managed to stabilize him and diagnose the problem.
The cardiologist who labored so long to save him, appeared in the waiting room and asked the most basic question relative to the situation: "do you want to let him live?" The alternative was not an option. My "yes" opened the door to more open heart procedures than a grown man or woman can handle, much less a less a three-day-old infant. But it was the door we walked through.
Dr. Midgely performed the first of three surgeries Johnny was to have over the next three years. At barely a week old, Johnny's heart was about the size of my thumb nail. Dr. Midgely performed what's called a Norwood procedure where he switched Johnny's cardiac plumbing to allow a mix of oxygenated and oxygen depleted blood to mingle and flow throughout the body. Suffice to say, in the Norwood the blood flow is redirected by some very complex snipping of the main pulmonary artery and connecting it to the aorta. Tiny arteries and veins are stitched together and a shunt inserted to complete the new circulatory system.
Dr. Midgely was one of the kindest, most soft-spoken, gentle person I've ever met. He was also a jogger. One day as he did his daily jog around the questionable streets surrounding Children's Hospital an asshole of a DC policeman decided Dr. Midgely was endangering traffic and claimed Midgely was belligerent after wrestling the surgeon to the ground and nearly dislocating his shoulder twisting his arm to cuff him. I might add that it was during the tenure of the DC Chief who hired his pals from the streets who sported criminal records and who, in record numbers, became even worse criminals - armed robbers, murderers, and "enforcers" for drug dealers while in uniform. DC then was often described as a very corrupt Third World nation. I do not exaggerate.
About six or so months later, Dr. Midgely performed a second procedure called the bi-directional Glenn. It was developed to allow the infant and his/her heart to get stronger before the final Fontan operation is performed. It decreases the workload on the right ventricle by shunting oxygen-depleted blood from the upper body directly into the pulmonary artery bypassing the heart.
I suspected that God had something special in store for Johnny because the bi-directional Glenn was developed shortly after he was born. When he was born, it didn't exist. It would have been two to three years before he would have been given the final Fontan procedure. Without the bi-directional Glenn, chances are the pulmonary vein system would harden making the Fontan either impossible to perform or making it less likely to succeed for very long. Dr. Glenn's idea increased the survival rate of Fontan patients to 90 percent.
(At the time, the practice among East Coast pediatrics was to perform the Norwood, Glenn and Fontan to save Hypoplastic Left Heart infants. On the West Coast, they preferred heart transplants. In Canada, parents either came to the Lower 48 for life-giving surgery or watched their children die thanks to that country's socialized medicine.)
The Fontan completes the conversion of transforming the right ventricle into the vehicle that performs the chores of the missing left
ventricle, normally the much more muscular of the two as it pumps oxygen-rich
blood throughout the body versus the right ventricle's task of pumping it to the
lungs for an oxygen recharge.
Not only was Johnny's timing right to benefit from the bi-directional Glenn but an even more ironic incident occurred at the family restaurant.
One day the head of pediatrics at Washington Hospital Center came into the restaurant with his wife for a late lunch. How they decided on our place, I used to call the "stealth restaurant" because you could pass right by it and never know it was there, I can't fathom to this day. I was out of the kitchen and struck up a random conversation with the two. I told them Johnny was born at WHC. I also mentioned his heart connection and that he was awaiting the bi-directional Glenn. Turns out the doctor's wife is a nurse who worked with Dr. Glenn and helped him develop the life-saving operation.
I couldn't believe it. Neither could they.
(to be continued...yet again)
I believe there was a silent, invisible hand that brought them in there. You are sharing some deep stuff here, buddy.
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