THE BLOG

High Risk

07/12/2012 01:31 pm ET | Updated Sep 11, 2012

On December 21, 2009 -- four days before Christmas -- my wife, Peyton, and I drove to Legacy Emmanuel Hospital in Portland, Oregon for an ultrasound exam. It was the fifth month of her pregnancy. Already we'd picked out names -- Phineas and Beatrix -- and we'd started painting the nursery walls, started acquiring baby furniture and impossibly tiny, animal-themed pajamas. My wife was 37 years old and, because of the twins, the pregnancy had been deemed HIGH RISK. Those words, in fact, were stamped twice in bright red ink on the pages of her file.

At first we'd joked about this. Everything in our daily lives had the potential to become, "HIGH RISK." "Are you sure you want to eat that banana?" Peyton would say, frowning and placing her hand, gently, on my shoulder. "What if it's 'HIGH RISK'?" Cue the dramatic organ music, here.

This visit went just like all the other visits. Until we noticed that the nurse was lingering over the ultrasound screen, moving the ultrasound paddle again and again over Peyton's swollen belly -- pressing harder, issuing the sound waves from a variety of different angles.

"Is something wrong?" I asked, as she took off her latex gloves and put away the bottle of conductive lubricant.

"Dr. R-- will be in shortly," she said, and left the room.

The longer we sat there, waiting, the harder it became to pretend that everything was fine. I walked over to the exam table and held Peyton's hand. We didn't say anything.

Finally, Dr. R-- appeared. She closed the door and walked across the room. She looked directly at us and said, without any preamble: "I'm very sorry to tell you this, but there's a problem with your baby's heart."

She went on to explain that our son -- BABY A, as she called him -- had a severely underdeveloped left ventricle. Hypoplastic left heart, the doctor told us, was the diagnosis. In all likelihood, BABY A would not survive childbirth.

"Please stop calling him that," I said.

"I'm so sorry," the doctor said.

I began to cry.

"Is there any way you could be wrong?" I asked.

"Of course," she said. "But it's unlikely."

With hypoplastic left heart, Dr. R-- told us, the left side of the heart does not properly develop. And the left side is the engine that pumps oxygen-rich blood throughout to the entire body. Without three surgeries -- without the Norwood, the Glenn, and the Fontan procedures -- death was a near certainty. Our son would need massive heart reconstruction, and then probably a heart transplant before the age of 30.

Dr. R-- raised the possibility of selective termination, a procedure where the attending physician injected potassium chloride through the uterine wall and into Phineas' chest. Just the briefest thought of this made me shake with grief.

I remember that our doctor kept apologizing. I looked around the room, at all the machinery that was so sterile and bright white and clean. I noticed the plump pillows, the thin, almost papery sheets. The scent of some kind of bleach, faint but distinct, hung in the air. Grief is a kind of madness, certainly, but it can be an analytic, functional, observational kind of madness -- the kind of madness that records, stores, remembers. It is wild, within boundaries.

***

We drove home. HIGH RISK was no longer a punch line. Peyton, who'd kept herself meticulously healthy during the pregnancy -- abstaining from alcohol and caffeinated tea and even chocolate, taking Omega-3 fish oil pills and a battery of expensive, pregnancy-only vitamins -- barely spoke. She took a bath and just sat there in the hot water, sobbing.

"What's so sad is that he's safe as long as he's inside of me," she said, cupping her belly in her palms. "He's fine as long as my heart's doing all the work."

Peyton dried off and got dressed and we turned on the TV. For some reason, A&E was running an all-day marathon of the program, "Intervention." This is what we did for the next five hours. We watched five episodes of "Intervention."

The next morning, we had an appointment with a fetal cardiologist, a specialist in the field.

"What do you think we should ask him?" Peyton asked.

"I have no idea," I said. And it was true. I felt like I was separated from the world by a thick panel of glass. We left the house and drove the rainy streets of Portland. The city continued about its business, indifferent and unaware of our particular tragedy. I don't remember much more about the hospital, about the waiting room, the nurses, or even the doctor, himself. The next thing I recall is the specialist's face -- as he finished his examination and turned towards us.

"Well," he said, pausing slightly. "Everything looks fine."

And so I said: "Fine? What do you mean fine? What's fine?" My breath felt like it was being pulled on a cord in and out of my chest.

"The heart is normal," he said. He pulled a pen from his lab coat and used it to trace a pattern on the monitor. "Here's the aorta. Here are the ventricles, right -- and left." And, sure enough, there it was -- the left half of his miniature heart. Yesterday, it had been unclear, invisible, definitively missing from the monitor. "It was probably a positional thing," the specialist said. "Sometimes, the bones from the other twin can obscure the view."

I leapt to my feet. I wanted to shake him by the shoulders. "Are you sure?" I said. "This time -- are you really and truly sure?"

The doctor looked perplexed.

"Absolutely," he said, pointing to the ultrasound screen. "See?"

On our way out of the clinic we saw Dr. R--. She came towards us, eyes welling with tears, clipboard in hand. She hugged me in a tight, and unexpected, embrace. "I'm so happy I was wrong," she said.

***

It has taken me over two years to write about this moment. I've not written anything about it because, in feeling one fragment of this sorrow -- in touching only its smallest margins -- I was terrified by the enormity of what I felt. It's a strange thing to have escaped, a kind of sad luck. The night of the misdiagnosis, I spent hours online, poring over the hypoplastic left heart message boards. These boards were full of optimistic people -- people celebrating their sick kids. I feel unworthy before these men and women, who manage, over many years, to sustain their strength in the face of their children's illness.

Parenting is a difficult, complicated business. But to parent against these odds, with a child who is so deeply ill, strikes me as nothing short of heroic. It is a kind of heroism that, in large part, goes unseen. And it's happening -- in our midst -- each day.

***

For more information about hypoplastic left heart -- or the most common worldwide birth defect, CHD, please visit Mendedlittlehearts.org.

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