"I knew he wasn't ready"
It takes a "dream team" of doctors and nurses to save babies born months early before they're due.
Jennifer Findlay remembers her delight when she first saw the image of her baby boy during an ultrasound. He looked tiny and perfect. The picture would come to haunt her a few days later.
Twenty-three weeks and six days into her pregnancy, Findlay went into early labour. As she rushed to the Abbotsford hospital, she kept remembering the ultrasound image.“I knew he wasn’t ready,” she said. “He wasn’t finished yet.”
Born Sept. 1, 2013, the baby weighed 1.7 pounds. He couldn’t breathe, eat or regulate his temperature on his own and was immediately intubated and transported to the neonatal intensive-care unit (NICU) at B.C. Women’s Hospital.
He would be among the smallest babies cared for at the hospital that year.
“I didn’t know if there was any hope,” said Findlay. “I was so scared.”
About 1,200 babies are admitted each year to the NICU at B.C. Women’s Hospital. More than half are premature.
Fifty years ago, a baby born at 24 weeks’ gestation had a slim to no chance of survival. But with steady advances in technology and care over the decades, the smallest and sickest babies are beating the odds more often.A baby born at 24 weeks now has a 70 to 75 per cent chance of survival in Canada, said Dr. Brian Lupton, medical director of the B.C. Women’s NICU. Ten years ago, the percentage would have been 10 to 20 points lower.
“We’re not talking about enormous leaps,” Lupton explained. “But over the decades, we are seeing improvements in survival and improvements in long-term outcomes.”Lupton calls the gains “hard fought” — a description Findlay and her husband, Aaron Wood, understand better than most.
As their baby hovered between life and death, the couple struggled to grasp the numbers and percentages related to survival and long-term complications.
Wood said they kept coming back to one simple thought: “We were not going to give up.”
They named their son Izak-Jaron, his second name a tribute to their first son, a baby they lost to pneumonia when he was two months old.
When medical staff asked them if they wanted to stop treatment for Izak-Jaron, their answer was no.• • • • • •
Dozens of life-and-death dramas play out each day in the B.C. Women’s NICU.The 60-bed ward is a busy place, separated into several large, open rooms, each containing about 12 incubators.
Surrounding many of the incubators are various life-sustaining machines, as well as parents and medical caregivers.In the middle is the baby.
Neonatologist Dr. John Smyth said Izak-Jaron had two brain bleeds that were detected after his birth, causing doctors to be concerned about brain damage. His immediate survival also depended on his lung function.“The lungs need to be well enough developed to sustain life,” said Smyth.
“A ventilator will assist, but it can’t do anything if there is not enough lung there.”Izak-Jaron was given oxygen and surfactant therapy to help his lungs inflate.
The groundbreaking treatment, which replaces a protein missing in the lungs of premature babies, has saved many lives since its introduction almost 25 years ago.Still, Izak-Jaron’s parents recall several days when it was “touch and go.”
Ten days after he was born, Izak-Jaron had his first surgery to remove a damaged and inflamed portion of his intestine.After that, he began to stabilize. One month later, he had another surgery, this one to close off a small artery near his heart that should have closed after birth.
In mid-December, he had a third surgery to halt the progression of an eye disease that premature babies sometimes suffer as a result of not being able to cope with varying levels of oxygen.In all, Izak-Jaron had 23 blood transfusions during his time in hospital.
Through everything, Smyth said doctors continued to be most concerned about his lungs. Entering the new year, the baby still couldn’t breathe on his own.Meanwhile, Findlay and Wood had put their belongings into storage and moved into the Easter Seals House near the hospital.
The days and nights blurred together as they sat beside their son’s incubator, crowded by beeping machines.The average NICU stay is between 10 days and two weeks, said NICU medical director Lupton, though about 20 per cent of patients stay one to three days, while another 20 per cent stay 20 days to a year.
Only three per cent of babies spend more than three months in the NICU.Those babies become especially dear to the nurses who care for them daily, said the NICU’s program manager, Julie De Salaberry, during a recent tour of the NICU.
On this day, two nurses stood beside a baby’s crib making silly faces as a tiny girl beamed back at them.“Baby comfort volunteers,” with parental permission, attended to infants who were crying and unsettled, touching them gently, tucking in their blankets or offering a soother.
Scattered around the NICU are rocking chairs. In one of them, a mother held her baby against her chest, enjoying skin-to-skin contact, while another breastfed her baby.Parents have 24-hour access to the NICU and are considered part of the medical team, said De Salaberry.
“We’re shifting toward a scenario where the focus of care becomes the mother,” she explained.When possible, treatments and therapies are performed with the baby close to his or her mother. A pilot project is planned to keep some mothers and babies together in the NICU after birth.
B.C. Women’s is part of the Canadian Neonatal Care Network, which allows doctors from across Canada to collaborate on research. The network also publishes a report comparing NICU data from various hospitals to shed light on areas of success and challenge.The work aims to understand both the short- and long-term effects of treatment decisions and to inform future care.
In 1993, 21 years ago, William Walker was born at B.C. Women’s at just over 26 weeks’ gestation. He weighed two pounds.Now a bioengineering student at the University of Washington, Walker said he was put in what was then a “cutting-edge” incubator that monitored his oxygen levels.
“I think the care I received is what has allowed me to live a normal life,” he said.• • • • • •
One month and one day after his birth, Findlay held Izak-Jaron for the first time.“It took a team of four people to put him in my arms,” she recalled. “I had to sit perfectly still, but he loved it. He started to thrive with the skin-to-skin contact.”
Early in 2014, Izak-Jaron’s life became a little more normal as he was finally weaned from the machines that helped him breathe.Six months after his birth — after 190 days in hospital — he was discharged.
His parents call the doctors, nurses and medical staff who helped to save his life their “dream team.”The B.C. Women’s NICU recently launched a $17-million fundraising campaign to provide new equipment for the nursery.
Several years ago, hospital leadership identified the NICU as the “top area of need,” explained Laurie Clarke, CEO of the B.C. Women’s Hospital Foundation.“They were struggling to keep up with aging equipment and technology,” she said.
The public phase of the campaign began in May and soon crossed the $10-million mark. The money has already gone toward state-of-the-art incubators, ventilators and monitors, which provide more precise care.With $7 million to go, Clarke said the new technology is also key to attracting and retaining top medical staff.
The NICU will benefit from a new building at the end of 2017, changing its structure and practices in a dramatic way by eliminating the open-bay ward in favour of 70 single rooms with space for a parent to stay the night.It’s expected the new NICU will provide a quieter and darker environment for the babies, while also reducing infection and making it easier for families to be together.
“We’re very excited about what the future will bring,” said Lupton.As Izak-Jaron’s first birthday approaches, Findlay and Wood are also excited about their son’s future.
He’s a happy baby who likes attending baseball games with his dad, said his grandmother Marcia Belisle, who lives with the family.
“He wakes up every morning with a smile on his face,” she said.
At 15 pounds, he’s growing well and recently started eating rice cereal.He remains on oxygen as his lungs continue to recover, and he may eventually require another surgery to deal with the effects of the brain bleeds, said Smyth.
While it remains unclear what impact his early days will have on his future development, Izak-Jaron is seeing an infant-development specialist at B.C. Children’s Hospital.As they always do after an appointment at the hospital, Findlay and Wood recently took their son to visit his “dream team” in the NICU.
Dr. Smyth and several other staff were on hand to say hello.
“I love to see all of their reactions when they see how well he’s doing,” said Findlay.
“When you look at him today, it’s hard to believe everything he went through.”LIFE-SAVING ADVANCES
• Surfactant therapy: The discovery that premature infants who died of respiratory distress syndrome (RDS) were lacking a substance called surfactant (which helps the lungs inflate) led to the introduction of surfactant therapy in the late 1980s and early 1990s. The game-changing treatment led to a significant reduction in neonatal mortality.• Infection control: Recent research has shown that preterm babies are more susceptible to infections because their immune systems are not fully developed.
• Dietary advances: The B.C. Women’s NICU has a special room where mothers can pump breast milk, which is then stored until needed. The smallest babies are fed through a feeding tube. If babies require more calories, the breast milk is supplemented with the correct nutrition.• Technology: Advances in equipment such as incubators, ventilators and monitors allows doctors to be more precise when dealing with tiny volumes of air, medication and food. Regulating oxygen is key to preventing eye damage in premature babies.
— Source: B.C. Women’s Hospital medical staffTHE GREY ZONE
The B.C. Women’s NICU is a place of miracles — and of sorrow.NICU program manager Julie De Salaberry said staff are there to support families “through the whole journey,” including times when treatment isn’t successful or possible.
Advances in neonatal care can present doctors and families with difficult decisions, said Dr. Anita Ho, associate professor at the University of B.C.’s Centre for Applied Ethics.The “grey zone,” or limit of viability — the level of maturity below which survival is unlikely or would result in grave disability and suffering — is typically pegged at 23 to 24 weeks.
“The grey zone keeps falling,” said Ho.With life-and-death decisions come ethical questions about what is best for the child, as well as issues of resource allocation in a taxpayer-funded system.
“It’s sometimes not a question of if we can, but should we?” said Ho.Complicating the discussion is the difficulty doctors have judging future quality of life.
B.C. Women’s neonatologist Dr. Pascal Lavoie agrees more research is needed to accurately predict outcomes for very premature babies.“Much of it depends on how unstable and sick they are in the early days,” he said.
Families and medical staff sometimes decide to withdraw care to prevent undue pain and suffering.Lavoie said parents can suffer from post-traumatic stress as a result of the time their baby spends in the NICU.
“To have their child between life and death for a period of time is very difficult,” he said.But while his job is often a “heavy responsibility,” it brings much joy as well. Near the hand-washing station at the entrance to the NICU is a bulletin board plastered with thank-you cards. Almost all are accompanied by a picture of a smiling child. twitter.com/glendaluymes