When Desirée Tattersfield was expecting her first child six years ago, she decided not to bank her baby's umbilical-cord blood in a private bank.
While she and her husband knew a bit about the potential uses of that blood to treat a number of diseases and disorders for their baby or even relatives, they simply didn't have the $1,000 to start, plus the approximately $100 annual storage fee.
Now pregnant with her second and able to afford it, Tattersfield again decided against it; she and her husband had dug into the statistics and they just aren't moved by the low percentage of families who use their stored blood.
"One company was 12 transplants out of 43,000 samples," she says.
But now that Canada finally has a public cord bank ready for donations, Tattersfield has a new option. Because she's delivering at one of the first participating hospitals (the move was announced last week), she can donate her baby's cord blood free to be part of a national registry run by Canadian Blood Services.
While Tattersfield is confident in her family's decision, her case illustrates how complicated decisions about cord-blood banking have become. No longer is it just about cost and potential medical uses; now, it's a choice between public or private, and the greater good versus having a personal safety net.
It's a highly emotionally charged decision. When you donate publicly, it's possible your sample could not meet the public system's more stringent standards and therefore be discarded. And if accepted, families do not have dibs on their own samples.
"We understand the risks we're taking, that if we need it, we may not find a match in the public cord bank," Tattersfield says. "I would say there are higher chances we'd find it there than needing our own cord blood. And if we can save another child's life who is waiting right now, why not?"
Experts on both sides of the debate are unanimous that a public bank is long overdue.
Cord blood is now used to treat about 50 diseases and disorders, mostly blood cancers like leukemia and metabolic disorders like aplastic anemia. It is considered a better option than bone-marrow transplants for some patients. The cord blood contains blood-forming stem cells that can boost the immune system and help patients form new blood. Recent research is showing promise in its use to lessen the severity of cerebral palsy and Type 1 diabetes in children. And there's a study under way investigating the potential link between autism and cord blood.
Canada is the last of the G8 countries to set up a bank. Currently, most cord-bank transplants in Canada are done with samples from international public banks, primarily from the United States, Australia and Spain. According to Canadian Blood Services, there were 74 cord-blood transplants completed in Canada in 2012 using international sources. (While private banks facilitate some transplants, they account for a much smaller proportion.)
"It's not experimental; it's become routine in the last 10 years," says Dr. Robert Klaassen, pediatric hematologist and oncologist at Ottawa's Children's Hospital of Eastern Ontario. He is currently treating two babies in need of cord-blood transplants.
"It's a slow process, which is where having our own cord bank will hopefully speed up the process. We won't have to ship them from somewhere, if they match."
Not a fan of private banking, Klaassen would like to see the public bank's goal of 18,000 cord-blood samples in the first six years more than double to 40,000.
For now, public donations are being accepted for births only at the Ottawa General and Ottawa Civic hospitals, to be followed by hospitals in Edmonton, Brampton, Ont., and Vancouver in the coming months.
The latter two sites were chosen specifically to boost the ethnic diversity of the Canadian bank. As transplants become more common for diseases such as sickle-cell anemia, which disproportionately affects children of African and South Asian descent, matching samples can be hard to find in the heavily Northern European international database.
Like many involved in the private banking system, Dr. Clifford Librach, the director and founder of Toronto's CReATe Cord Blood Bank, welcomes the public bank not only because it increases the pool of potential matches, but because it may increase awareness about the practice. Only about 2 to 3 per cent of new parents are choosing private banking in Canada, he says.
"Now that the government has sanctioned cord-blood banking, it supports the concept over all."
And until the roster of participating hospitals grows, parents may be more inclined to research private banking options in their hometowns. Most banks will accept couriered samples from most hospitals.
(That is setting aside for the moment another complicating factor: Recent research has found that delaying the timing of the clamping and cutting of the umbilical cord helps a baby's iron levels and blood volume, among other things. But this may also reduce the amount and quality of the cord-blood sample and rule out banking, according to some research.)
Expectant Thornhill, Ont., mother Elyse Neuman is planning to bank her second child's cord blood privately this winter. She has been sold on the practice since she was pregnant with her first – and ran into a friend who was suffering from leukemia, one of the conditions that can be treated with cord-blood transplants. Her friend urged her to store the baby's cord blood.
"We looked into it and the first and foremost reason was, 'Do I want to look back and think I made the wrong decision and I should have done it because God forbid 100 times over my daughter needed it and I thought the financial burden wasn't worth it?' "
It's an emotional vise that may be loosened with the advent of a public system. At the very least, it appears that there will be fewer umbilical cords heading straight for the medical waste bin.
As Dr. Ian Rogers, a stem-cell scientist at Toronto's Mount Sinai Hospital and one of the founders of Toronto's Insception Cord Bank (now Insception Lifebank), puts it, "Just don't throw it out."