Over the past weekend I was
reminded how much some readers have loved my second novel, Eli’s Heart. A reader bought a second copy because she wanted other people to read it but didn’t
want to lend out her only copy. That’s a great compliment for an author and
very much appreciated, and I thought I’d remind readers about the late great
pianist Samuel Sanders who inspired the book.
Teralogy 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 un-oxygenated 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.
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, even though 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.
cover design: Tristan Flanagan
Eli’s Heart is available on Amazon as both paperback and e-book.
https://www.amazon.com/Elis-Heart-Carousel-Trilogy-Book-ebook/dp/B00LE5MNAK/
