I am about 21 months younger than my brother. Little did I know when I was a baby that I had a very sick brother. He didn’t have any blood disease or malfunctioning brain. My brother had a mechanical problem with his heart.
If he had been a car, my folks could have taken him to the shop, and the mechanic simply replaces the faulty parts. Simple. That is the sort of problem my brother had.
Somehow he was born with the great vessels which go to and from the heart crossed in such a manner that the blood coming from the lungs was being pumpled back to the lungs and the blood coming from the body was being pumpled back to the body. The condition is known as “Transposition of the Great Vessels.”
The only thing that kept him alive was a hole in his heart’s septum, which allowed enough oxygen to feed his little body enough to keep him alive. All infants have holes in the heart’s septum, it closes after a couple of years, and this is what saved his life. But, as he got older, it started to close, suffocating him one millimeter at a time.
This was grueling for my parents, particularly for my mom, who had two babies, side by side, one healthy as a ripe tomato, and one slowly literally rotting on the vine.
For this there was no cure. That is what the doctors told my parents, so they figured he was doomed to die. But a relative saw and article in a newspaper or magazine, talking about a doctor in Chicago who was performing a new technique on these types of babies.
They loaded up the car and drove from Louisville to Chicago and met Dr. Thomas Baffes, and he said that this treatment would work on my brother.
So they sent me off to stay with my father’s brother while my parents went with my bro to Chicago to have major heart surgery, done with a procedure that was just a couple of years old and still rather dicey.
The working on the car analogy above is serves the description well, because in essence that is all they were doing, taking out the bad parts and putting in good parts, in this case tubes.
There is only one problem with doing it on an infant baby of 2 years, with stunted growth, the baby is a living organism, and you are working on the engine, you can’t very well stop the engine on it, you have to change the tubes while the engine is still running….that is tricky business. Add to that, there existed no heart lung machine at the time, so the heart was still beating, the blood had to flow during the operation.
Well, it was an overwhelming success. Almost instantly my brother recovered. Now, he was growing, eating, and catching up to me in his development. I had walked before he did. So, by the time I was aware of anything going on, everything with him was back to normal.
But, yet, it wasn’t normal. There was still one element that remained unanswered.
We rarely appreciate the human body and the divine miracle it is. We take for granted to coordination of growth within the body that functions together in harmony to become an adult. We don’t realize even today, with all of the geniuses out their with their wild technology that the organic fibers of nature are far more developed than our measly brains can figure out how to replicate.
The tubes used to replace the crossed ones were man-made and fitted to a capacity of a 2+ year old infant’s proportions. Those tubes didn’t grow with the rest of the body. They functioned amazingly well, but day for day, week for week, month for month and year for year, slowly over time my brother was suffocating again.
This realization first came into my conscience when my brother wanted to start participating in sports. He loved baseball and wanted to play, but the doctors all prohibited it. It saddened my brother to no end. I’ll never forget his disappointment at that time.
Here we were brothers, almost twins, and he was a good athlete, he had the coordination, knowledge and skills for it, and more than anything else, he still has the desire to win. He is competitve.
Year after year I would notice an increased tiredness and lack of endurance until one December evening, when he was about 15 or 16, we were out walking around the neighborhood and he sat down and basically collapsed.
That evening, my parents were hosting their Sunday school classes Christmas Party at our house, while my friend stayed with Mark, I ran home and got my father up from the dining table and he could see it in my face, he called an ambulance immediately.
For three days my brother was in intensive care having a stroke. A blood clot had moved from his heart to his brain and cut off the oxygen supply. His blood had always been very dark, and thick due to his lack of oxygen, and so there he was shaking like an epileptic in the cold of the hospital ward. I of course was a minor and was not allowed to see him.
He survived the stroke and was transfered to Vanderbilt Medical Center where he was treated and diagnosed. At that point his life was really a day to day battle. It isn’t like he was going to just fall over and die, but you never knew what was going to happen.
The neurologist refered us to a cardio-surgeon who suggested we think about my brother having an open heart procedure known as the Mustard Proceedure. This required splitting the chest bone, the sternum down the middle, opening the chest cavity, taking a piece of paracardiem from the sac which holds the heart, taking out the atrial septum, creating a tunnel in the heart with that paracardial tissue and closing the heart back up. They would tie off the old tubes and he would be again able to have a more normal blood count.
The chambers of the heart have certain pressures, and so, the question was, would the paracardial tissues hold? Would the stitching hold? How would the body react to this drastic change? He was still being treated for the stroke. It was an intense time.
The result of that operation was equally as astonishing as the first, his appearance improved 100% almost instantly. Instead of being “Blue” he was “Red”. Meaning, his blood was now full of oxygen.
Still, the effect was that the heart was now functioning normal in every way, but actually sort of backwards, in reverse. I don’t understand it completely, but that is the way they explained it to us.
Even with the oepration at age 17, for several years there he was always haunted by the fact that he might die, in fact it was likely. Imagine, ever since you were aware of life around you, that you could just die anytime? A classmate at school said to him once, “I thought you were dead.” to which my brother answered, “I did too.”
35 years later, my brother has a PhD in Geography and is a full professor. He is married to a great wife and has 3 healthy and beautiful daughters, one graduated from college, and married. All three are championship cheerleaders, meaning, 8 National Championship jackets hang in the closet at their home. Athletes, great kids, and excellent students.
My brother, who spent his life thinking he was going to die, has given a great life to the world with his sincerity, his kindness, his intelligence, his love and most of all you never heard him complain about it. Not once.
My brother is a hero, maybe a silent one, but a true hero.
P.S. I understand that today, medicine has come so far that when a baby is born with this defect they can can correct it with arthroscopic surgery, meaning a minimal invasion to the body and the baby can lead a normal and active life.
Miracles do happen.