During her second pregnancy in September 2014, Angelika Romanska and her husband opted for a private 3D ultrasound to figure out their baby’s sex.
But instead, the couple received devastating news.
The ultrasound indicated a brain bleed suggesting the baby may have suffered a stroke in the womb. There was a high likelihood the baby would be born with cerebral palsy, a physical condition that affects movement, muscle tone and posture. Cerebral palsy impacts 1 in 400 Canadian babies.
In the seemingly endless doctors’ appointments that followed, every option seemed to be discussed. However, sadly, the option of storing the baby’s umbilical cord blood was never raised with the parents. When collected at birth, umbilical cord blood can be stored and potentially used for treatments to aid patients with cerebral palsy.
Now, Romanska hopes no mother is ever put in the same position.
“I felt like my body was paralyzed when I found out (my daughter) Leyla had potentially had a stroke and knowing all the problems she would face in the future,” Romanska said. “I wish I knew cord blood collection was an option and that I knew about it earlier.”
“It was a huge decision for us, but we wanted to optimize her future as much as we could, and wanted to know we did everything possible to help her.”
A flicker of hope
It wasn’t until after Romanska gave birth that she and her husband learned about cord blood through a forum for parents of children with cerebral palsy. The couple began researching cerebral palsy treatments in earnest as they wanted to consider all their options in the wake of their lost cord blood opportunity.
Through their investigation, the couple learned that an emerging area of research was the use of sibling cord blood to treat cerebral palsy, and that Duke University Medical Center offers cord blood therapy for children with various brain disorders under an FDA-approved Expanded Access Program.
A brighter future
In 2018 Romanska gave birth to a healthy baby girl named Ela. They stored her cord blood through Insception Lifebank’s free Cerebral Palsy Sibling Cord Blood Collection Program. The siblings were a match and one year later, the family travelled to Duke and Leyla received an infusion of her sister’s cord blood.
Romanska recalls, “It was a huge decision for us, but we wanted to optimize her future as much as we could, and wanted to know we did everything possible to help her.”
At the time, her neurologist told the family Leyla would probably need a speech device to communicate. Nine months after the cord blood infusion, Leyla was “bursting” with speech.
“Before the infusion, she couldn’t make sentences and now she’s saying a different word every single day,” Romanska said. “She’s putting three-word phrases together; her speech therapists are amazed.”
The mother also revealed she’s seen a dramatic increase in Leyla’s energy levels. Before treatment, she would easily fatigue after 15 to 20 minutes of doing simple tasks like going for a walk to the park or grocery shopping.
“I’m shocked. Leyla is like a typical child now,” Romanska said. “She can go from our house to the park and she’s full of energy, full of smiles. I’m just blown away with how the cord blood has helped with that.”
What is umbilical cord blood?
Umbilical cord blood is the blood that remains in the placenta after a baby is born. It’s rich in stem cells and has been used as an alternative to bone marrow in life-saving treatments like cancer, blood disorders, and genetic diseases. Thanks to organizations like Insception Lifebank, parents can now store their baby’s cord blood in the event they need it for their own child or a sibling down the road.
To date, cord blood stem cells have been used in the treatment of more than 80 life-threatening diseases and in place of bone marrow in more than 40,000 transplants worldwide.
An emerging field
To store cord blood, it is kept in the vapor of liquid nitrogen (-195°C) where it can remain indefinitely.
“Stored cord blood can remain viable for many decades at a low temperature; the molecules are not degrading. There are publications showing that cord blood stored for 23 years is just as good as the day it was collected,” said Dr. Ian Rogers, an associate professor and associate scientist at Lunenfeld-Tanenbaum Research Institute.
Rogers was a part of the team that established Canada’s first cord blood bank at Toronto’s Mount Sinai Hospital in the mid-1990s, and he’s been heavily involved in the field ever since.
“The landscape is changing rapidly. The use of cord blood in place of bone marrow transplants is well established, and the regenerative medicine field around using cord blood to treat cerebral palsy, autism, osteoarthritis, and skin wounds is moving fast,” he continued.
A message for parents
Romanska urges all expectant parents to consider banking their baby’s cord blood —she never wants to see another family in her position.
“Leyla is a healthy, beautiful girl that brings so much energy and happiness to the house,” she said. “But I definitely wish I knew about storing umbilical cord blood earlier and I want other families to be aware that they can store it and optimize their own child’s future.”
If you’re expecting a child and would like to learn more about storing umbilical cord blood, visit Insception Lifebank and request your free information kit.