Tommy’s third year of life was like an obstacle course for all of us.  Our goal was just to get to the end of it as quickly as possible.

It started shortly after his birthday in January when his ENT doctor wanted to schedule a surgery to have his tonsils and adenoids removed.  But he’s so little and fragile, we protested.  She insisted it was necessary for his ability to swallow.  So we gulped ourselves and relented. It seemed like his recuperation was barely over when another surgery followed. Tommy needed bilateral tubes in his ears to overcome his chronic ear infections. His ENT assured us that he could tolerate a second procedure.  I remember consoling myself with the thought that he might be too young to recall any of this in the years ahead.

Then came an unexpected development.  Tommy started walking.  His balance had been inhibited by the blockage in his ears.  Almost overnight he abandoned his little walker on wheels and started wobbling around the house like a newborn chick.  My new pastime was to watch him explore with a crooked smile pasted on my face.

The Heart of the Story

During our next visit to his PCP, it was recommended that we see a cardiologist since children with Down Syndrome often have heart issues.  Just a precautionary routine checkup.  Right.

I was employed at Franciscan University of Steubenville at the time, and a recent change in insurance providers meant that we could no longer use physicians in the Pittsburgh area.  Pediatric cardiologists “in network” were scant.  The closest one was across the Ohio River in West Virginia.  After the initial visit, we were required to return for an ultrasound and other testing.  I was starting to get concerned.  Okay, I was already concerned the first time we crossed the Ohio River.  By the time we arrived for our third appointment, I was having my own heart pathology. 

The grandfatherly visage and voice did little to assuage my anxiety.  “Your son has a hole in his heart the size of a quarter,” indicating the size with his finger and thumb.  “It’s going to require open heart surgery to repair.”  Visions of this little peanut of a kid with his sternum separated and his heart and lungs connected to a bypass machine sobered me to a grim silence. 

The Waiting Game

The weeks that passed before the scheduled surgery were filled with prayer requests and attempts at distraction.  At last the day for pre-op testing arrived.  As we wound through the hills of West Virginia, I felt like we were “taking him for a ride” by concealing the real purpose for our “field trip”. 

The hospitality at the Ronald McDonald House was a welcome respite and an opportunity to connect with other families preparing for their child’s procedures.  Testing consumed the better part of the day.  My wife and I ran out of ways to occupy Tommy during the long waits between the sequence of protocols.  I could feel my tolerance ebbing away.

Darkness comes early in the late Midwest autumn, and so the day seemed interminable by the time we were asked to have Tommy provide a urine sample.  I queried the young technician about the necessity of this last indignity.  I cautioned him that my son was born with bladder exstrophy and could not produce a specimen on cue.  He reassured me (not), that he could obtain a sample using a catheter.  What little assurance remained quickly dissipated when he asked me to hold Tommy down while he inserted the tube.

Tommy’s screams immediately pierced the room.  As the boy professional attempted to force the catheter past the apparent blockage, I watched my son writhe in pain for a few seconds before I shouted “Stop it!” withdrawing my hold on his limbs.  It was instantly clear that this technician had no idea what bladder exstrophy was, and had no experience with its intricacies.

He apologized awkwardly and offered that he could use the urine from Tommy’s pullup instead.  I brought our exhausted son back to our home away from home and settled him in for the night.  It was far from a day that built my confidence for the surgery that awaited the next morning.

A Turn In The Road

Dawn greeted our threesome walking tight lipped across the parking lot to the imposing facility that loomed.  After the formalities, we were ushered into a cubicle with a crib and directed to dress our son in a hospital gown that was big enough for a six year old. He looked like Pooh’s friend Piglet swimming in his bedsheet.  And so the waiting began.

Fifteen minutes; thirty minutes; an hour.  A nurse appeared to inject him with something to make him groggy, apologized for the delay and promptly disappeared.  Another fifteen minutes; thirty minutes; an hour.  The drug had turned Tommy’s body into an amorphous lump of jello that scoffed at his efforts to stand.  Demanding an explanation when the nurse returned, she made some vague reference to an unavoidable circumstance, but couldn’t say how much longer it would be. 

Something wasn’t right.  We had agonized and prepared for weeks in anticipation of this moment, and suffered through the gauntlet of pre-op tests, but something  seemed to be restraining us from moving ahead.  Finally the nurse pulled back the curtain of our little anteroom fighting back tears and demonstrably distraught.  “I’m very sorry”, she faltered, “but the doctor has been doing an emergency brain surgery for most of the night.  He is still willing to proceed with your son’s surgery if you are able to hold on a little longer.”

Pardon the pun, but the decision was a no brainer.  We thanked the nurse, put Piglet back in his street clothes, and returned to Steubenville.  On the way back, Madeline and I puzzled over the nurse’s odd behavior.  She wasn’t telling us everything – that much was clear.  But what was behind it?  Had she argued with the surgeon about the advisability of a second surgery?  Was she physically and emotionally spent from the all-night vigil?  Was she in the cross hairs of some kind of ethical dilemma?

The Surprise Ending

When my mother, who lived in a distant city, learned of the postponed surgery, she told me directly during the phone call that she would be willing to cover the out-of-pocket costs incurred by a return to the Pittsburgh provider network.  Although I was reluctant to tap her limited resources, I couldn’t turn down the offer.

After another battery of tests the subsequent month, we faced the man who headed the cardiology group at Children’s Hospital.  He repeated his questions about observable symptoms in Tommy that had first indicated to the prior doctor the need for intervention.  When we gave the same answers, he paused and continued in a subdued tone.  “There isn’t a physician in this entire hospital that would conduct an open heart surgery on your son.”  I was simultaneously torn between elation that Tommy didn’t need it, and outrage that he had come so close to being subjected to it. 

He went on to describe the “hole in his heart” as a small flap that would close itself over time.  Leaving the parking garage, we were both filled with gratitude to God for my mom’s gracious offer and stewing over the potential for a malpractice lawsuit. 

Ultimately, we lacked both the time and the money to take legal action.  With that thought behind us, a new awareness emerged.  The numerous obstacles to surgery that day weren’t arbitrary.  There was a spiritual power at work to prevent it.  Tommy’s guardian angel had intervened to avoid a potentially life-threatening procedure on a healthy three year old boy.

I hearkened back to Scriptures that pledge such protection.  “See I am sending an angel before you, to guard you on the way and bring you to the place I have prepared (Ex. 23:20).”  And “The angel of the Lord encamps around those who fear him, and delivers them (Ps. 34:8).

Tommy’s third year came to a close with an emphatic reminder that (thanks be to God) we are not alone.