Radio Active health series: Silas's story

Even before her son's birth, Blessie Mathew knew Silas's survival would not be easy.

Only moments after seeing his grainy outline on the ultrasound for the first time, Mathew got the diagnosis.

Unlike his twin sister who appeared perfectly healthy, Silas would come into the world with a birth defect, congenital diaphragmatic hernia.

The muscles in his diaphragm failed to form completely, leaving a hole in the muscle between the chest and the abdomen.

When he was born, 10 weeks later, the family's medical ordeal began.

"We were very unsure about what his chance of survival would be once he was born," said Mathew who shared her story as part of Radio Active's The Patient Child health series.

• The Patient Child: Radio Active health series

"The twins were delivered by C-section. They were two months early. We had two NICU teams standing by. Silas was intubated immediately because they didn't want him to take a breath on his own until they could figure out what was going with him.

"Over the course of 14 months, he spent nearly 300 days in the hospital. We went through 14 admissions through emergency."

The next year and a half was a blur of white coats, beeping machines and anxious moments as Silas struggled to thrive, spending weeks in care at the Stollery Children's Hospital and the Grey Nuns Community Hospital, she said. 

In the course of a day, the young parents would see an overwhelming number of of doctors and specialists, nurses and doctors.

"I did sincerely feel that the health care providers that I interacted with had Silas's best interest at heart … but the challenge as a parent becomes piecing all of these things together," Mathew said. 

"As his parent, I had to learn a lot and quickly about his condition and how each of these practitioners played a role in supporting his health."

Gut instinct 

Throughout it all, Mathew says she's learned an important lesson. Not only should you have faith in the medical experts, but you should also trust your gut.

It was a lesson she learned during one of those long nights in NICU.

She had little sleep that night as she fussed over Silas. His tiny frame was writhing. He bawled throughout the night and into the morning.

Even so, a medical resident came into the room and announced that he was healthy, gaining weight and would soon be sent home.

"This was in our first three-month stay where Silas was quite unstable and kept going into respiratory failure, and we had all these issues with feeding and immunity. 

"And I said, 'Something is not right.' And his response to me was, 'Well, babies cry all the time.'

"And I said, 'That may be true, but this baby doesn't. I know him, he's my child, he's unsettled, something's wrong. I'm not going to permit you to discharge my child until his pediatrician comes and sees him.'

"I just dug my heels in."

Within a few hours, before the pediatrician arrived at Silas's bedside, he had to be revived by doctors after falling — once again — into full respiratory failure. 

Silas has come a long way since that morning. 

Now three years old, Silas is finally at home with his sister Hannah and older brother Caleb.  Although still reliant on tube-feeding for sustenance, his health is stable.

Mathew is thankful for the medical help her son received and for the unexpected ways Silas has changed their family forever. 

"It was really interesting to watch how (his siblings) just recognize these differences in him, and were just so accepting ... and I'm hoping that will translate to their social circle and people they interact with throughout their lives, that natural acceptance of differences.

"It definitely has shaped us, a lot.

"He's mobile, he's happy. He's a really normal kid. He still has some medical challenges, but in the long run we're pretty hopeful that he's going to lead a pretty normal life."