The story continues the night Ben was born...
The doctor thought it was a chromosome problem, but he didn't know what, and when pushed by D'Arcy, he said Ben had a 50 per cent chance of having brain damage.
How could we figure out what Ben needed? Could he see a geneticist?
There was nothing to be done that night, the doctor said. He’d be back in the morning.
From 3:30 to 6 a.m. we tried to get Ben to latch on to breastfeed (he had an unusually small mouth and receding chin) but despite guidance from a lactation nurse, we weren't successful.
We bottle-fed him and D'Arcy collapsed on a cot. I held Ben and sang him "happy birthday" – something I had planned, but not with tears streaming down my face.
The doctor returned with a furrowed brow and a list of seven things that were "wrong" with Ben. In addition to his facial anomalies, he had a larger-than-usual liver and undescended testicles.
"What about his breathing?" I asked, reminding the doctor that he was born with irregular breathing and had had some dusky spells.
“If he has trouble breathing, just drive him over to SickKids' emergency department.”
SickKids was at least a 15-minute drive from our house.
“How will we get him in to see a geneticist?”
The doctor was leaving on a ski trip, he said, but if I called the hospital maternity ward first thing Monday morning, the clerk would make the referral.
We took Ben home and he slept in his car seat – like a china doll – propped up in our bed between the two of us. At 8 the next morning I called the ward, only to be told that a physician had to make the referral and they knew nothing about it.
Our midwife encouraged me to call a different pediatrician – a Dr. Till Davy. I reached the nurse at his office and read off the shopping list of "defects" the doctor had given me.
A few minutes later a man with a precise, staccato-like voice came on the line and introduced himself – in an Austrian accent – as Dr. Davy. He had a soothing, melodic way of speaking that made you feel he was genuinely interested in what you had to say.
"Our son was born on the weekend," I began.
"Congratulations!" boomed the voice on the other end.
Had Dr. Davy pressed the wrong line?
"Could you be so kind as to bring Benjamin in at 5 p.m. today?" he asked.
At 5, a tall man in a white coat with a meticulously-groomed haircut and beard enthusiastically reached out to shake our hands and congratulate us. Even his stethoscope – clasped by a small stuffed koala bear with magnetic arms – was friendly and lighthearted.
Dr. Davy picked Ben up like he was holding a priceless vase, and laid him on the examining table. For the longest time, he just looked Ben closely in the eyes – admiring what he obviously considered to be a mysterious and sacred new life.
Ben gazed back.
Then he began to physically examine Ben, poking and prodding him, peering into his ears and eyes and tapping on different parts of his body. The hospital doctor had touched Ben impassively – like a machinist turning over a defective product. Dr. Davy delighted in him as a most intricate, fascinating puzzle.
Ben's eyes locked on him as his sing-song voice flitted from an intimate whisper in Ben's ear to a hearty laugh and a light blowing on his tummy.
Dr. Davy quickly ruled out any problem with his liver. Ditto that he had a cleft lip and palate that needed surgical repair.
Finally, his verdict: "I think he has a syndrome," he said in his lyrical voice, his eyes still fixed with reverence on Ben’s. There was no judgment in his words, no devaluing or disapproval, simply an estimation of the way things were.
In those moments – which added up to exactly two hours passed closing time – Dr. Davy gave us our son back.
I hugged him.