September 15, 2023
When baby Gabriela was born, she was diagnosed with spinal muscular atrophy (SMA) through the Alberta Newborn Screening Program. “I didn’t think SMA would happen to us or Gabriela, but getting her screened ensured we could give her a head start in life,” says her mom Camila Iwaniszyn. The program aims to prevent health problems, improve newborn health and save lives. Here, Gabriela is shown being held by her father Arthur, with her mom and brother Jacob. Photo supplied.
Story by Vanessa Gomez
CALGARY — Newborn screening made a profound impact on the family of Arthur and Camila Iwaniszyn.
“We understood what newborn screening was at a high level, but didn’t know how important it was to some people,” says Arthur.
When their daughter Gabriela was born, their midwife took a routine bloodspot sample, as part of the Alberta Newborn Screening Program (ANSP) – a provincewide screening program offered to all babies by Alberta Health Services (AHS).
The program works to prevent health problems, improve health and save the lives of Alberta newborns through early diagnosis and treatment of specific conditions such as spinal muscular atrophy, cystic fibrosis and more. Using a quick heel poke, drops of blood are collected on a special card and tested for 22 treatable conditions.
Two weeks after Gabriela’s sample was taken, she was diagnosed with spinal muscular atrophy (SMA), a condition that causes progressive muscle weakness over time. It affects the ability to crawl and walk and, sometimes, even the ability to breathe and swallow.
“When we received the phone call, it felt like a blur and the panic set in. We had no idea what SMA was,” says Camila. “But we were determined to find out more information and help our daughter.”
The Calgary family then began their journey to find treatment for their daughter began, with a team of healthcare providers on board to help them along the way.
“It was overwhelming dealing with so many people involved, but they were working really fast,” Camila adds. “I found it comforting to know so many people cared about her. Her doctor already had a treatment in mind — and we just had to wait and see if she was eligible.”
After a week, the family found out Gabriela was eligible for treatment. Today, after receiving treatment, Gabriela is a happy six-month old, and meeting all her developmental milestones.
“Now that we’ve seen how screening works, the impact it had on us and the steps we took to help Gabriela, we’re more grateful than ever to have had screening, or we never would have known,” says Arthur.
Dr. Jean Mah, Pediatric Neurologist at the Alberta Children's Hospital, adds: “Newborn screening saves lives. It gives children the best chance to live healthy and normal lives.”
The Iwaniszyn family hopes more parents-to-be will realize how important newborn screening is for their babies.
“I didn’t think SMA would happen to us or Gabriela, but getting her screened ensured we could give her a head start in life,” says Camila. “Screening is a good safety net. It can save both their life and quality of life.”
Learn more about the Alberta Newborn Screening Program.