Local family shares their experiences on World Prematurity Day
Every year, on November 17, World Prematurity Day brings awareness to the worldwide prevalence of preterm births. Premature births are the leading cause of infant mortality nationally, and around the world. According to the Canadian Premature Babies Foundation (CPBF), 30,000 babies are born prematurely each year in Canada.
CPBF says they play a major role in promoting World Prematurity Day across Canada. They join forces with organizations and individuals from more than 100 countries to raise awareness, organize special events, and take action to address preterm birth and improve outcomes for preterm babies and families. They also support the International Global Illumination Project, lighting landmarks and monuments in purple to honour preemies, their families, and their dedicated caregivers.
The City of Kingston illuminates City Hall in purple every year for World Prematurity Day, and confirmed they will participate in the initiative again this year.
“It’s important for us to honour World Prematurity Day as a way to raise awareness of the impact of premature birth on children and their families,” said Neonatologist Dr. Robert Connelly, Program Medical Director of Pediatrics at Kingston Health Sciences Centre. “Learning to care for a preterm baby can be one of the most emotional times in a parent’s life, and premature birth can result in lifelong challenges. It takes an entire team of professionals to make sure that these patients and their families have the best outcomes possible.”
“We are one of the few Level 3 neonatal intensive care units (NICUs) in Ontario, which means that we are able to provide the most acute level of care to vulnerable babies from across our entire region,” Dr. Connelly continued. “We have a team that is able to do amazing, lifesaving work, which means that families of southeastern Ontario can receive care closer to home during this stressful time.”
A local story which highlights the struggles that can come from a very premature birth, is that of the family of Athena Cowell – a baby girl born at 25 weeks gestation in March 2017.
Considered an extremely preterm birth, Athena was born at just 2lbs, 2oz. She required intubation at birth to support her lungs, and spent the first 18 months of her life in hospitals. During her short life so far, Athena has endured 15 surgeries, including heart surgery.
Athena’s grandmother, Jo Matyas, shared her experience in a supporting role to a preemie family.
“When the phone call came in the middle of the night that Kayla and Pete were at the hospital and Kayla was in full labour, I had no idea of what lay ahead in the world of premature birth. As far as we knew, a premature baby was one who came early and was small. Didn’t know much more than that. What we faced ahead was a steep learning curve and a roller coaster of a ride that still continues,” Matyas said.
“Athena’s birth was intense, fast and, honestly, quite terrifying. I was honoured to be there for her birth, but it was a very uncertain time. Things happened so quickly, and the newborn is immediately whisked away in an incubator to the NICU.”
“As a parent and a grandparent, I found myself trying to support both my new, very fragile granddaughter and my adult son and daughter-in-law,” she continued. “For the first 18 months, while Athena was in hospital, we were back and forth to the NICU several times each day to help spell off the exhausted and overwhelmed parents. My husband and I are both self-employed, so we managed to shift our work times so we could be there to help. We also regularly travelled back and forth to Ottawa when Athena was at CHEO to be with her at surgery times and in the ICU to give Pete and Kayla [Athena’s parents] a few days break to rest back home.”
While still a tiny newborn in the NICU at KGH, Athena pulled out both of her support tubes, which resulted in her trachea collapsing. Thanks to prompt action, the NICU staff at KGH was able to force her airway support tube back in and save her life.
After a diagnosis of subglottic stenosis, a narrowing of the trachea, Athena’s family had a choice to make.
“The options presented were to wait and hope she grew out of it and her trachea widened as she grew, while keeping her intubated. Or to have a tracheostomy tube put in, in addition to a stomach valve for direct feeding,” explained Pete Cowell, Athena’s father. “We opted for the second option, and Athena had her first surgery.”
Fast forward to today, and Athena, at three-and-half years old, has had pneumonia with a secondary bacterial infection, prompting a two-week stay at CHEO around her first birthday, and two stays at KGH, once for withdrawal symptoms from the medications used during her pneumonia treatment, and then for a severe cold, later that year.
At the end of September 2018, Athena was back in CHEO for a laryngotracheoplasty, in which surgeons rebuild the airway with cartilage taken from other sites in the body. She stayed in Ottawa for a week post-op, then ended up back in KGH to deal with withdrawal symptoms again. Sadly, she caught yet another cold, which extended her time in KGH.
Matyas and her husband, Craig Jones, became full-time caregivers for Athena. “At 18 months, once Athena was discharged from hospital and both parents were back at work, we learned from the surgeon that Athena could not be in a group daycare and had to be cared for by someone trained in emergency trach care,” Matyas said. “This was unexpected news. My husband Craig and I had both taken that training and, with our flexible schedules, we stepped forward to offer childcare during the work days.”
“Initially we all thought that would be for just a few months, but it has stretched for more than two years now and it looks like we have at least another year ahead of us,” Matyas continued. “This meant that we cared for Athena full-time through the week and did our own job work in the evenings and on weekends. While this has been exhausting, we realize that we have had the opportunity of a lifetime to help this little family and to create a lifelong, loving bond with this incredibly strong, curious and smart little girl. We have been honoured to be able to help provide the care she needs.”
Around the time Athena was celebrating her second birthday, she was given the all clear to wear a speaking valve, which improved her ability to use her voice.
“She got used to that and was given a full cap to put on her tracheostomy in June,” said Cowell. “A speaking cap fully blocks air in and out of a tracheostomy tube, forcing her to breathe through her nose and mouth.”
September 2019 saw the family expecting yet another surgery, but Athena became ill again. The expectation was to schedule a follow up in a few months to create a strategy to get the tracheostomy out. Unfortunately, the COVID-19 pandemic shut-down delayed her appointments.
When the appointment with the surgeon eventually happened, it turned out that Athena had developed some lesions from HPV. The lesions were removed in December, but, according to Cowell, HPV lesions don’t have a consistent timeline for growth. Some grow back every two weeks, others never come back after removal. This now complicates her ability to heal from any major surgery.
Even though Athena’s family has spent her entire life painfully aware of illness and safe social interactions, the current pandemic has still seen some changes in their life.
Kayla is in school at St Lawrence College and working part time, which is a new experience for the family, and means they are extra vigilant at keeping their hands clean when going in and out of the house, and to mask up whenever they go to a store, or are generally near people. Pete is currently on leave from his work, and is primarily a caregiver for Athena.
“Our hospital and therapy visits are almost entirely done over teleconference calls, though we do have the occasional occupational therapy visit in person,” shared Cowell. “The biggest issue has been with CHEO and their scheduling due to limited capacity, ICU bed availability, and the like. It’s pretty much put everything on hold in regards to any appointments up there.”
“For us, we’re pretty much homebodies now, we take Athena out for walks and to playgrounds as long as they’re not busy,” he explained. “She likes to play with our neighbour’s dogs when they’re outside in nicer weather. We would love to find ways to get her around other kids safely, but that doesn’t seem like a possibility for now.”
“The biggest change is fearing how bad it could get for her, and not wanting to be back in PICU [pediatric intensive care unit] if she gets sick. Respiratory illness hits her especially hard, pneumonia and influenza have both nearly killed her, so adding those risks on top of COVID is especially concerning,” Cowell continued.
“Our families have been incredibly helpful and caring. Nothing has quite bonded us like caring for Athena. She truly is the little spark of the family. You’re never prepared to be a parent, and you’re definitely not prepared to have a preemie. The upside is you get a head start on meeting your little one. The down side can be all kinds of complications that last for years.”
“The biggest upside is that she doesn’t know any difference, so she doesn’t feel like she’s missing out. Ignorance is bliss for her.”
A GoFundMe has been set up by a family friend to help support this family. They have a long road ahead of them still.
“We plan on using the vast majority of the money to help provide Athena with additional speech and feeding therapy. Our research and our provided therapists (who Athena sees once or twice a month) tell us private therapists cost $100/hr and up. And we’d like to get some intensive therapy time for her once she is able,” Cowell shared with Kingstonist.
“We plan on using some of the money to help keep Athena’s quality of life high, and making sure she has educational games and toys to play with in lieu of being able to go to daycare or preschool.”
To learn more about preterm birth visit the The World Health Organization fact sheet.