When Heather Radford gave birth to her son Gage in January 2015 at 22 weeks and 6 days there was no one she could relate to. At the time, the birth viability rate for preterm babies was closer to 24 weeks. And although she had already been down the premature birth path before with her daughter Rileigh, and was working in a local hospital Labour and Delivery ward, she knew no one with first-hand knowledge of a preterm baby this gestational age. “I was told when it happens to turn off the monitors and get palliative care for my baby”, Radford said. But when that pivotal moment came, both Mother and baby chose to fight instead. Together they spent 120 days navigating the NICU at Sunnybrook Health Sciences. Gage, who is now almost five, lives with mild cerebral palsy and low vision and is meeting most of his age expected milestones. He brings joy every day to his Mom and siblings. “I think he is perfect, is he your perfect textbook 4-year-old- no, but he doesn't have to be perfect to a have a good quality of life and bring joy.”
Three years later in May of 2018 Kieran Powers’ pregnancy started to show signs of complications, she was 22 weeks and 5 days. After a failed attempt to close her cervix with a stitch known as a cerclage, Kieran found herself sitting down with a neonatologist being presented with gloomy statistics. “We were told there was a 30% survival rate and 90% chance he would have severe disabilities”, she says. “I had given birth to my first son Beckett the year before at 23 and 5 days and he passed right away, so I had little hope, but Lincoln came out kicking and screaming”. With that fighting spirit and the remarkable new innovations in neonatal ventilation, baby Lincoln is defying the odds today.
Lincoln now 15 months, is impressing the medical staff at his NICU follow up clinic appointments.
“What we once considered non-viable only a few years ago, those neonates are now surviving and being discharged home,” says Dr. Prakesh Shah Interim Chief, Department of Pediatrics Mount Sinai Hospital. “We have changed care …we have a reduced rate of invasive ventilation and now manage many babies without endotracheal tube during their entire stay.”
“Lincoln was intubated for more than 2 months and it took 5 extubations (3 planned, 2 unplanned) to finally get him off the vent. He was tried on NIPPV and CPAP and ultimately what worked for him was the NAVA machine that they were trialing in the unit at the time. I think he was on the only NAVA machine at the time. NAVA had a special feeding tube with sensors that measured the breaths he was taking through his trachea, and adjusted the pressure to support the breathing he was doing on his own, rather than providing a set pressure like with CPAP. Not sure if they wound up getting it for the unit but it worked great for Link!”
Lincoln now 15 months, is impressing medical staff at his NICU follow up clinic appointments.
A few months ago his Mom and Gage’s Mom connected via the Canadian Premature Babies Foundation (CPBF) peer support page. They finally met “IRL” and were able to share a hug and compare “Unicorn (22 weeker) Mom” notes, something that is extremely rare in Canada.
“It was cool finding each other and especially having someone who is four years ahead of us,” Kieran says, “Seeing her 22 weeker come so far and know he is doing so well is comforting”. And for Heather, knowing that her decision to fight for Gage might have changed some medical minds or given a family like Lincoln’s some hope just a few years later was inspiring.
Every year 32,000 babies are born prematurely in Canada. Any baby has trained over 145 parents to become mentors and provides grants for 20 hospitals and 3 community groups to run peer support groups. CPBF also provides online Peer to Peer support and evidence-based parent education across the country enabling our most vulnerable citizens in remote parts of Canada to find comfort and knowledge.
The Canadian Premature Babies Foundation https://www.cpbf-fbpc.org has trained over 145 parents to become mentors and provides grants for 20 hospitals and 3 community group to run peer support groups. CPBF also provides online Peer to Peer support and evidence based parent education across the country enabling our most vulnerable citizens in remote parts of Canada to find comfort and knowledge.
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