Pre-Existing Condition by Dr. Stephen Caldwell

After the diagnosis of his son, Dr. Stephen Caldwell, used music to chart his family’s experience with CHD. Watch below, and find the lyrics to “Pre-Existing Condition” and Dr. Caldwell’s thoughts on his work. 

 

Notes from the Composer Stephen Caldwell:

In 2016, my wife and I were expecting our first child. The joy and anticipation of a routine ultrasound turned into nightmare, an experience that many CHD families share. The technician became very quiet. He zoomed in very carefully, taking more pictures than normal of our child’s heart. He sat very still. “Mr. and Mrs. Caldwell, I am going to get the Doctor…”

Like 40,000 other babies each year, our son was born with a Congenital Heart Defect. His diagnosis left us speechless: Tetralogy of Fallot with conoseptal hypoplasia, right-sided aortic arch, left-ventricular systolic dysfuction, and left branch pulmonary stenosis. The next several months unfolded like a dream that included multiple medivac helicopter rides, more than 100 days spent in the CVICU, two open heart surgeries (a palliative procedure to install a Central Shunt at 6 weeks, and complete repair at 9 months), millions in medical bills, 20,000 miles driven between where we lived in Fayetteville, AR, and Arkansas Children’s Hospital in Little Rock, and stress on an indescribable scale.

Pre-Existing Condition chronicles that journey, from the onslaught of medical terms thrown at parents when they receive the diagnosis, through the birth of a medically fragile child not knowing if they will live, through helicopter rides, 911 calls, ambulances and ERs, the stress of extended CVICU stays with their uncomfortable chairs and constantly beeping monitors, and the cloud of emotion that runs around these events.

At the center of the chaos, however, is a child. A child that needs love, attention, and support. A child that shows their parents what courage is. Children born with CHDs are remarkably fierce in their determination to live, and are immensely proud of the scars they bear. Though labeled for life by medical and insurance companies as having a “Pre-Existing Condition” these children fight against the tide of that label, to prove to everyone that every life has equal merit.

Pre Existing Condition Lyrics

I. Congratulations!

Mister and Missus, I’m going to get the Doctor.
Anomaly…results of the ultrasound…
Results of the echocardiogram…your child has
Anomaly of the heart…Tetralogy of Fallot…
Ventricular septal defect….congenital
No blood flow to the lungs…and the aorta isn’t in the right position
May not survive.
Right ventricular outflow tract…right-sided aortic arch
Pulmonary artery is too small…won’t be able to breathe
Here’s a drawing of a healthy heart – this is what your baby looks like…
Won’t be able to breath…pulse-ox is low…
May not survive.
Surgery.
Perfusion, myocarditis, cyanosis, Tet Spell
Diminished systolic function.
Truncus arteriosis, transannular patch, NPO
Transposition of the arteries, ECMO
Capilary refill, pacing wires
Hypoplastic Left Heart Syndrome
Conoseptal Hypoplasia
Captopril…milrinone…stenosis…
Coarctation of the aorta…probably dysphagia
Patent ductus arteriosus…expect emisis…tachycardia
And watch for aspiration…bradycardia…
Diminished Systolic function.
May not survive.
It’s not the end of the world.
There’s a risk of mortality.
It’s not your fault.
We need your consent.
Do you have insurance?
It’s a boy!
The ICU is $8,000 per day.
May not survive.
Congratulations!

II. Small Hands (From somewhere I have never traveled, gladly beyond, by EE Cummings)

Nothing which we are to perceive in this world equals
the power of your intense fragility: whose texture
compels me with the colour of its countries,
rendering death and forever with each breathing
(i do not know what it is about you that closes
and opens; only something in me understands
the voice of your eyes is deeper than all roses)
nobody, not even the rain, has such small hands

III. Angel One

The ascent seems slow,
Like a rollercoaster clicking away at your fears,
But the fall never comes.
The light is heavy, full of guilt,
The engine’s pulsing onslaught reminding you of your every breath,
Giving the vibrations in the air memory.
The restraints dig and cut.
Frantic haste masked by stillness.
The grass is so green! The sky so blue!
As the Angel slices through the cloudless view,
Beating its heart in a race against another,
Extinguishing like the moonlight at dawn.

IV. CVICU (after Li Po)

Amongst the chaos, I am along with him.
Staring at a cup, half-full of water,
Brought by a nurse, who said I looked thirsty.
I ask the moon to drink with me.
Then I sigh, for the moon cannot drink.
Surrounded by people, but alone, I sing to him:
“Hush now, little baby boy.
Go to sleep, and dream your little dreams.”
I’m glad to make the moon my friend.
But when it becomes too much, we part.
For now, I need steady emotion.
I hope someday we all will meet again,
Deep in the Milky Way.

V. Scars

What will they think of you and me, when they see our scars of such degree?
What will they wonder, with quiet nod, what did they do to be punished by God?
Did they not pray? Did they not sacrifice?
“My kids are fine because we worship Christ.”
They give you a smile, but once out of sight, they say to themselves,
“That kid isn’t right.”
What will they think of you and me, when they see our scars of such degree?
Will they think you a warrior with courage so brave?
Will they think you a hero, of the lives that you’ve saved?
Will they ask of your battles, of your stories and lore?
Of combat and fighting and bullets and war?
Should we tell them this anyway and hope they’ll see,
That we don’t need their sympathy?
What will they think of you and me, when they see our scars of such degree?
Scars are forever, there to see, what has happened to you has happened to me.
Wounds of the flesh one can hide. Wounds of the soul are kept all inside.
Our scars are the same, yours and mine.
Your scars of the body, my scars of the mind.

VI. The Deepest Secret (I carry your heart, by EE Cummings)

I carry your heart with me (i carry it in
my heart) i am never without it(anywhere
I go you go, my dear; and whatever is done
by only me is your doing, my darling)
I fear
no fate (for you are my fate, my sweet) I want
no world (for beautiful you are my world ,my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than soul can hope or mind can hide)
and this is the wonder that’s keeping the stars apart
I carry your heart (i carry it in my heart)