Take Two: The
Inspiration for ELI'S HEART
Tegralogy of Fallot, the heart condition my character Eli Levin lives with, is a complicated and frightening disease which is present at birth. Physicians have been aware of it for centuries. According to Wikipedia, "It was described in 1672 by Niels Stensen, in 1773 by Edward Sandifort, and in 1888 by the French physician Etienne-Louis Arthur Fallot, after whom it is named."
Eli’s Heart was inspired by a friendship I had decades ago
with a brilliant teenage pianist born with this congenital heart condition. Samuel Sanders
was fifteen when I first met him and heard him play. He was visiting a sister
who lived in my hometown and he came to my house several times, and we listened
to recordings of orchestral music, played piano duets (which was definitely
daunting for me!), talked about books and baseball. His activities were
restricted because of his congenital heart defect.
With a lot of help from Dr.
Aarti Asnani, a cardiologist with Massachusetts General Hospital in Boston, I
finally developed a grasp of the condition. There are four separate defects of
the heart: a hole between the lower chambers (ventricles) of the heart, which
means unoxygenated blood is mixing with oxygenated blood; a narrowing of the
valve between the right ventricle and the lungs, which means not enough blood
is getting to the lungs to be replenished with oxygen; a thickening of the wall
of the right ventricle; and an aorta which is misplaced and is drawing blood
from both ventricles.
The result is a considerable reduction in the amount of
oxygenated blood distributed to the body. The average person receives between
90 and 95% oxygenated blood. TOF patients receive sometimes less than 50%.
Breathing is a struggle. Any physical activity, even walking, becomes difficult
and can be life-threatening. Many children died in infancy, or did not survive
puberty. Cyanosis (blue coloring of the skin, especially fingers, toes and
lips) is a primary symptom.
In 1944, Drs. Alfred Blalock
and Helen Taussig, with considerable help from Blalock’s assistant Vivien
Thomas, developed a procedure to alleviate these children’s suffering. A shunt
was created by attaching a branch of the aorta to the pulmonary artery which
increased the flow of oxygenated blood. Sometimes this increase was dramatic;
sometimes enough to at least ease their symptoms. From my understanding,
patients who survived the procedure lived more normal and longer lives.
However, the heart was not repaired. The Blalock-Taussig procedure was
considered “palliative” ─ it eased the worst of the symptoms, but all four
defects of the heart were still there.
About ten years later an
open-heart surgery (called the “total correction” or “total repair”) was
performed which patched the hole between the ventricles and widened the opening
to the lungs, giving the patients a chance at a better quality – and quantity –
of life. Over the past decades, as TOF patients have lived longer (some into
their seventies and even eighties) other surgical procedures have been
developed and refined, and a range of medications also exists to help treat the
condition. It was at first considered a congenital heart defect. It
is presently considered a congenital heart disease, a life-long
struggle with a heart which can never be made “normal.” From my understanding,
there is no one “standard” procedure for these patients. One comment from Dr.
Asnani in our extensive correspondence stands out in my mind:
“With regard to treatment options for (adult)
TOF patients, it’s definitely not a straightforward decision to pursue surgery,
so we will often try to manage with medications for as long as possible.
Newer technologies like cardiac MRI are helping us figure out when the heart
dysfunction is progressing to the point where heart surgery is absolutely
necessary to prevent a further decline, though we’re still wrestling with
defining the exact timeline.”
One of the first things Samuel Sanders told me
was that he didn’t expect to live past the age of thirty. Other than that, and
telling me about the cyanosis and that he’d had surgery, he didn’t discuss his
condition and I didn’t ask questions. We concentrated on enjoying the time we
had together.
After hearing him play – brilliantly –
the Rachmaninoff Second Piano Concerto a few months later, I lost touch with
him. Some thirty years later I met a young man who was studying accompanying
with Sam at Juilliard, so he’d have been in his early forties at that time. His
student also told me Sanders had opted to work professionally as an accompanist
rather than pursuing a career as a virtuoso pianist. I was very glad to hear he
had survived past the age of thirty and was still sharing his extraordinary
gift.
I thought of him again when I watched the HBO
film “Something the Lord Made” (highly recommended) and wondered how he was.
Internet searches revealed that he had died at the age of sixty-two. He’d had
the B-T procedure when he was nine and two additional surgeries (the total
correction and a heart valve replacement), and eventually not one but two heart
transplants. The second one failed, sadly. While not a household name, he had a
long and illustrious career as a collaborative pianist and performed with some
great musicians who definitely ARE household names. I list a few of his many
recordings in the discography at the end of the book.
My book is fiction, and my character Eli Levin
is the product of my imagination. I did not know Sam Sanders beyond that brief
friendship when we were both little more than children. However, his passion
for music certainly had a lasting impact on me; he was indeed an
extraordinarily gifted pianist and musician. We don’t meet many musical
prodigies in our lifetime, and if and when we do, we never forget them. The
fact that this one also had a damaged heart made him even more unforgettable.
ELI'S HEART is available on Amazon as both paperback and e-book.
http://www.amazon.com/Susan-Moore-Jordan/e/B00IBZ731U/ref=sr_ntt_srch_lnk_1?qid=1411935465&sr=1-1
(first posted on July 3 - edited)