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. 

 

University of Arkansas Schola Cantorum

Dr. Stephen Caldwell, Director

Pre-Existing Condition*                                                Stephen Caldwell (2018)

                      1. Congratulations!

                      2. Small Hands

                      3. Angel One

                      4. CVICU

                      5. Scars

                      6. The Deepest Secret

 

Hannah Mindeman, Piano

Nikola Radan, flute

Kyleigh Pell, marimba

Chris Scherer, vibraphone/glockenspiel

Collette Soriano, drum

 

 

*World Premiere Performance – https://youtu.be/uQjxhjrcnpc

Funded in part by Fulbright College of Arts and Sciences 2017 Summer Faculty Research Grant

 

 

Notes from the Composer:

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

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 travelled, 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)

 

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