Cord Blood Bank of Canada clients want to know if kids' stem cells are viable, as company faces $600K lawsuit
'What if we really needed it?': Parents say Toronto company not returning calls
Dozens of parents across Canada are worried about the state of their children's potentially life-saving stem cells now that the Toronto company they've been paying to store them is facing a $600,000 lawsuit and won't return their phone calls.
CBC News first reported on the Cord Blood Bank of Canada (CBBC) and its owner Bernadette Ellison more than two years ago. At the time, a CBC News investigation revealed the company failed a Health Canada inspection in 2015 but could continue to operate if it only stored samples for the potential use of the person they belonged to, not family members.
That change made it unlikely the samples could be used at all, as there's a very low probability that someone's own stem cells can be used to treat them, according to Health Canada.
CBBC's clients said they were sold the service based on potential use for family members. So after Health Canada's order, a few parents started to try to transfer their children's samples to another facility.
Since then about two dozen more clients from across the country have reached out to CBC News unsure where to turn for information about their samples because for over a year the company's voicemail message has said CBBC is not returning calls because of a medical emergency.
Heather Girling and Lucio Valvasori are among those concerned.
The Toronto couple, like a growing number of parents across the country, decided to pay for private storage of their children's umbilical cord blood. Stem cells in cord blood can be used to treat some health conditions such as leukemia, according to Health Canada.
"We put all this money and effort towards our children's future," said Valvasori. "We could have invested it, we could have used it for other things and we decided, no, let's do this for them."
Valvasori and Girling say they've spent more than $8,000 between initial fees and annual storage with CBBC for three of their children.
Now they're questioning whether the stem cells they stored are still viable after CBBC failed to charge them their annual storage fees last year.
"I've left numerous messages. No one's called me back," Girling told CBC News. "I've actually left messages saying that we needed the blood."
"What if we really needed it?" said Valvasori.
That question echoes those raised by another CBBC client two years ago.
Back then, Natasha Bitsakakis-Pack told CBC News storing her children's cord blood became more important to her family after her younger daughter was diagnosed with a rare genetic syndrome as an infant. The Waterloo, Ont., mother was trying to start the process of moving her daughters' samples to another facility in the fall of 2017.
In the years since, she and her husband took their efforts to court. The couple's lawyer filed an application in Ontario Superior Court in May 2018 to try to force CBBC to release and transfer their two daughters' samples. The move came after the company had allegedly refused to release the samples unless Bitsakakis-Pack paid CBBC $33,500, according to the court application.
Waterloo, Ont., couple's samples not viable
The case was later settled out of court, and the Bitsakakis-Pack samples were transferred from CBBC to another cord blood banking facility in February 2019.
After arriving at the new facility the samples were tested, and the results revealed that due to a low percentage of viable stem cells, the samples were "unusable for any medical purpose," according to a statement of claim filed by Bitsakakis-Pack in December.
The $600,000 lawsuit against CBBC and its owner, Ellison, is for allegedly failing to store the samples properly to ensure their viability for medical use.
Bitsakakis-Pack declined to comment for this story because the case is still before the courts.
Despite visits to the company's office and Ellison's home, CBC News has been unable to reach CBBC's owner directly.
In an email, Ellison's lawyer, Margaret Waddell, made reference to the company's medical emergency voicemail message and said her client "has suffered a very severe injury and she is not available for an interview."
The lawyer later refused to respond to questions for this story, citing Ellison and CBBC clients' privacy, but did provide CBC News with a copy of the statement of defence from the Bitsakakis-Pack lawsuit.
In it, CBBC and Ellison deny all alleged misconduct and say the company "acted in good faith and performed its contractual obligations" at all times.
In terms of the viability of the Bitsakakis-Pack samples, CBBC argues the family's decision to move the samples put them at risk and "is the most likely cause of any reduction in the viability of the stem cells in the samples."
The statement of defence also states the couple "acted unreasonably if they were relying on the cord blood samples to provide peace of mind, and particularly if they held any belief that the samples could provide treatment options for either their children or themselves."
And that CBBC has never "made any representation that any cord blood stored by it would be fit for use in medical treatments of any kind."
VIDEO: Toronto couple reacts to legal response from Cord Blood Bank of Canada
At the kitchen table of her Toronto home, the mom points to paperwork that sold her on CBBC in the first place, quoting a pamphlet that reads "banking your baby's cord blood, your once in a lifetime opportunity to secure your family's health."
"How can people do this to other people?" said Girling. "To go to court and to try and make these statements like that? You know that's evil. How does she live with herself?"
Treatment with own stem cells unlikely: Health Canada
Health Canada published a compliance promotion document online in February 2018, outlining information on cord blood banking. In it, the national health agency noted the low probability of using your own cord blood if needed for treatment, because cells from a healthy donor would be preferred to their own.
Studies have estimated the chances of using your own samples for treatment are between 1 in 20,000 and 1 in 250,000, according to Health Canada.
CBBC chose not to dispute the findings of a Health Canada inspection the company failed in 2015, because it argues it had only ever been storing samples for the individual's use, according to its statement of defence in Bitsakakis-Pack's suit.
But more than two dozen clients CBC News spoke with say that was not their understanding when they signed up, and a handful of them paid an additional fee each year to store an extra sample for the use of a family member.
Girling and Valvasori stored their second child Max's cord blood with CBBC in October 2013. Max died in July 2014, and Girling says when she informed CBBC the cord blood bank told her she could continue to store her son's samples for the use of her other child, so she kept up her payments.
Girling's credit card records show she continued to be charged the annual storage fee for Max's samples for two years after CBBC was no longer allowed to store samples for the use of family members, following the 2015 inspection.
"When you lose a child it's a life sentence of sadness, and it kind of puts things in a perspective of what's important," Girling told CBC News. "People make mistakes, but come clean."
Cheque comes back as undeliverable
Regina Bleile didn't realize something might be wrong with her two sons' samples until the postdated cheque she sent by registered mail for her CBBC annual storage fee came back as undeliverable in January 2019.
The Calgary mom says she then phoned CBBC only to listen to the company's medical emergency voicemail, which directed her to mail any inquiries about payment to the same address where she had already sent her cheque that came back undeliverable.
"I have absolutely zero faith in them," said Bleile. "I want proof that we invested our money in something very precious for a good reason."
Jaclyn and Paul Walbourne do too.
The Grand Falls, N.L., couple had their son's cord blood at the bank but when they tried to bank his sister's samples, they couldn't get ahold of CBBC and used a different bank.
"The only hope that we have is that, you know, our little girl's umbilical cord, if [our son] ever needed it, that he could use it," said Jaclyn Walbourne.
The Walbournes have filed complaints to the Better Business Bureau, Health Canada and police for help getting answers from CBBC but say "nobody wants to do anything about it."
A Greater Toronto Area police service investigated CBBC in 2017, but closed their investigation after visiting the company's location at the time and seeing a lab facility there.
Clients aren't the only ones looking for something from CBBC.
Federal court documents show that the Canada Revenue Agency (CRA) has been after CBBC for more than $724,000 in unpaid taxes since at least September 2018.
Nicole Brockbank can be reached at 416-205-6911 or at firstname.lastname@example.org
With files from CBC Reference Library