Pioneering preemies focus of McMaster MD's book

Once they were tiny babies, born premature and weighing less than two pounds, clinging to life at McMaster Children's Hospital. Today, those babies are "pioneers," said the doctor who has studied them for their entire lives.

A group of 16 former "preemies" gathered at the Hamilton hospital on Monday — World Prematurity Day — for the book launch of Preemie Voices, by Dr. Saroj Saigal.

Never give up on your children. And if you’re a preemie, never give up on yourself because you can succeed. It’s hard, but it’s worth it.- Michelle Smedes​

Today, more than 90 per cent of premature babies survive, a dramatic increase over 40-60 years ago. But, being born too soon still increases the risk of having disabilities like cerebral palsy and blindness, while issues like underdeveloped lungs also cause difficulties.

"It’s still precarious, it’s still scary, if you’re the mother or father it’s still very scary," Saigal told CBC News, adding the preemies in the room today, now in their 30s, were some of the first babies to ever receive specialized intensive care.

"They’re pioneers, actually, in survival."

Preemies focus on overcoming odds

Dr. Saigal is a pioneer in her own right. For decades, she has tracked the progress of 166 premature babies all the way from the hospital’s Neonatal Intensive Care Unit to adulthood. After they left the hospital as infants, Saigal saw the group at age 5 and 8, called them back at age 16, and then got curious and called again in their 20s.

"We were stunned at how well they were doing compared to what we were predicting," Saigal said.

Today she’s still studying those former preemies, many of whom now live independently and hold jobs in journalism, medicine and law. But as she was asking her latest round of clinical questions, Saigal also wanted to know about something more intangible.

"How do the children feel about themselves?"

Those answers are contained in a series of letters to Saigal that make up the first part of Preemie Voices, pieces of writing she calls "candid and beautiful."

Michelle Smedes, who was born weighing one pound 11 ounces, wanted her piece to serve as motivation for those facing a premature birth.

"Never give up on your children. And if you’re a preemie, never give up on yourself because you can succeed. It’s hard, but it’s worth it," said Smedes.

Her hearing and vision problems made learning English and Math a struggle, while sports – “I couldn’t see the ball” – were also tough. But despite being the only preemie in her school, Smedes overcame those struggles. Today, speaking for herself but fielding questions through an intervener, she was thrilled about adding published author to her list of accomplishments.

Hamilton lawyer Amanda McInnis, dressed in a sharp purple suit she made herself, echoed the idea of overcoming the odds.

“I was very ill for about my first ten years,” McInnis said.

A series of seizures, possibly linked to her prematurity, kept her and her parents in and out of the hospital. As an only child, it played a “huge role” in her life, and that of her parents.

“They’ve always made sure that I remember, and find strength in the fact that I had such difficult beginnings and was able to overcome those.”

Mac backs self-published work

For John Guise, a journalist and another preemie in attendance, the disabilities weren’t as severe, but the experience still mattered.

"Being premature, it didn’t have a negative effect on things. It probably drove a bunch of us," he said, pointing to his decision to travel and work in China for ten years.

"Would I have done that if I didn’t have the background that I did? I don’t know. I have a feeling that that probably drove me to take the chances more than I would have otherwise."

Saigal said getting her former patients to write was easy, but finding a publisher interested in the collection that’s neither a textbook nor pure fiction was difficult. In the end, Preemie Voices was self-published, with the help of McMaster’s Department of Pediatrics (which should really get the limelight, Saigal insists.)

The book’s second half, penned by Saigal herself, chronicles the improvements in the neonatal field, many of which were made at McMaster – which has the largest NICU in Ontario.

The science clearly came second for Saigal on Monday, as she hugged each of her former patients (speaking with colleagues at work, she often slips and refers to them as "our children," she admits) trickled in to the atrium ahead of the book’s launch.

"I’m just so emotional to see these tiny little babies we looked after, and now they’re independent adults and doing really well," Saigal said.