Adina Green

The Journey

Friday 30th May

When we had our first child, we were aware of the Stollery Children’s Hospital, but we were fortunate enough not to need many of its services. The few times we visited, the experience was smooth — in and out, nothing major.

Six years later, we welcomed our second child. But this time, things were different — deeply different.

By the time our youngest turned one, we had already seen 13 different doctors. Thirteen. He had been on antibiotics 12 times and was prescribed four different inhalers. And yet, no one could give us an answer as to why he was so unwell. There were constant chest infections, persistent breathing issues, and absolutely no explanation.

When he was almost a year old, in a desperate moment, I made a Hail Mary phone call to a doctor I had seen years earlier. A compassionate nurse took the call and, just from hearing him through the phone, knew something wasn’t right. We had an appointment booked two days later.

We walked into that appointment with what looked like a “healthy” baby, thinking at worst we’d hear it was asthma. But the doctor looked over the list of treatments — four inhalers, 12 rounds of antibiotics for 15 chest infections — and asked, “And no one ordered a chest X-ray?”

I replied, “That’s right. I asked many times, but they always said they didn’t want to expose a baby to radiation.”

This doctor, a man of few words, just shook his head and said, “Well, I don’t accept this. His breathing isn’t right.”

He sent us next door for an X-ray — the old-fashioned kind where you wait and bring the films back to the office. My husband, the nurse, the doctor, and I stood in silence staring at the images. His tiny lungs were filled with scar tissue — damage from untreated infections. The doctor shook his head again and said, “This isn’t asthma. It’s much worse. I need more tests, but from what I see, he’s aspirating food and liquid into his lungs due to a vascular ring.”

We were sent immediately for another test the next day. It was difficult — my son screamed, cried, and fought through it. Something no one warns you about: that you will have to help hold your child down for these tests while they cry for you. That moment broke my heart. He screamed, “Mama, no! Mama, help me!” over and over. And I couldn’t help — I had to help them.

Afterward, the doctor came out and said, “You need to go straight to your family doctor. We’re sending the results over now.”

I felt like I left my body — like I was watching the moment from somewhere outside myself.

We drove straight to the clinic. The doctor — again, a man of few words — looked at us and said, “We need more tests for a full diagnosis, but Landon has a heart condition. We don’t yet know the full extent. I’m referring you to a cardiologist and cardiac surgeon at the Stollery.”

We waited five long months for an MRI. It was finally done on May 17, 2017. The next day, our doctor called. “Get a pen,” he said. “We have a diagnosis. It’s rare — only medical journals have anything on it. I don’t usually tell people to Google a diagnosis, but in this case… I need you to. Read everything you can, and call me tomorrow.”

I stood in the hallway at work and cried.

The following Monday, we met with the cardiologist. We were still trying to make sense of everything when, by Wednesday, we received a pamphlet in the mail: Preparing for Your Child’s Heart Surgery. We hadn’t even been told he was going to have surgery yet.

On Thursday, we got a call confirming a surgery date — May 29 — and instructions to get a dental check-up beforehand. I scrambled to get the forms filled out, completely lost in the whirlwind of everything.

Then, on Friday, we got another call: the surgery was being bumped to June 7 due to an emergency case.

Just take a moment and sit with that.

Thirteen doctors told me it was “just asthma” and “bad luck.” Thirteen doctors dismissed our concerns while our child’s lungs were slowly being damaged, while a rare heart condition was being missed.

And now, suddenly, we were preparing for heart surgery.

I didn’t know how to process it. I don’t think anyone could.

I remember standing on the phone, hearing the words… and just saying: “What? I don’t understand.”

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