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Our son, born in April 2003and also named Williamwas diagnosed with complex congenital heart defects.
Liam, now 14, at age 11 with his mother, the author. Courtesy of Desiree Suchy, Photography by Desiree
The Kimmels call their William Billy; we call ours Liam.
Fourteen years later, the Kimmels would seek treatment for their baby at the same hospital.
Liam still has that scar.
Liam at 14 days old on the day of his first surgery. Courtesy of Amanda Adams
The CHLA flight crew came by ambulance from the airfield.
She said loss, not “need,” as though the outcome was already set in stone.
In the following years, I dreamed about this symphony of high-pitched alarms.
The author with her son in the hospital. Courtesy of Amanda Adams
Scientific knowledge constantly advances, but the fundamentals of lifesaving retain their own distinct and familiar tune.
Liam received IV lipids and fluids instead of food to alleviate any strain on his heart before his surgery.
He shrieked in hunger, wanting what my body made but his could not receive.
Liam at 14 months old with his dad, Jim, the day before a heart catheterization. Courtesy of Amanda Adams
That night, neither Jim nor I slept much.
We returned to the hospital before 6 A.M. and just held Liam until the doctors arrived.
First, we met Gerald Bushman, M.D., Liams pediatric cardiac anesthesiologist.
Liam at 13 years old with his younger sister, Moira, 12. Courtesy of Desiree Suchy, Photography by Desiree
He kindly guided us through what would happen in the operating room.
Then Dr. Starnes quietly joined him and politely waited for Dr. Bushman to finish.
This truth, despite the gentle delivery, was a hard blow.
The alternative isdeath, and sometimes that happens in spite of the best efforts of amazing doctors and nurses.
I held my child for hours before his surgery.
I stood there as the doors closed, not sure I would ever hold my child again.
That sounds short and sweet, but in those three hours, a childs life hangs in the balance.
During the surgery Dr. Starnes essentially replumbed Liams heart.
There’s no room for error.
That irony is never lost on their parents.
I collapsed and breathed deeply for the first time since my child was born.
After his surgery, Liam was positioned nearer to the nurses station and the crash carts.
Even a light touch could stress him, and hisheartneeded to rest.
Every tiny change in his progress seemed like an enormous milestone, and in its own way it was.
At the same time, every reversal or threat to his progress was heart-wrenching.
From that experience I took a constant vigilance that still grips me even after 14 years.
We left L.A. thinking Liam, now 14, would need two more surgeries, but hes had 12.
Six of those were heart catheterizations, a procedure that involves inserting catheters into Liam’s heart.
While described as noninvasive and certainly less risky than open-heart surgery, they’re still frightening.
It would have obliterated our finances.
If my employer hadn’t paid half of my premiums, it would have been tens of thousands more.
That money went somewhere else.
We will remember this when we get closer to retirement, too.
And that’s with good health care coverage.
Nothing is free in this country, not even survival.
Kimmel addressed this unthinkable reality in his Monday-night monologue.
“No parent should ever have to decide if they can afford to save their child’s life.
It just shouldn’t happen.”
It’s hard not to take capitalistic health care personally when that approach can literally kill my child.
That she had to stop and consider if she could afford it is chilling.
It’s not just me.
They face days ahead filled with dozens of doctors appointments leading to the inevitable terror of doing this again.
Fourteen years from now, they will still remember the last couple of weeks like they just happened.
Even with repairs, complex congenital heart defects have a lifelong impact.
Last week, the Kimmel family became Heart Warriors.
May their battles be brief and the victories sweet.
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