Umbilical cord blood banking is appearing on social media feeds now pregnant influencers are promoting it - and it has rubbed some experts up the wrong way. Alanah Eriksen asks if the costly practice is worth doing?
The pregnant influencer looks down at the product, her husband cradling her burgeoning belly.
Clad in crisp white pants with immaculate makeup and slicked back hair, she holds a small white box. Inside it, a kit to collect precious blood from her unborn child's umbilical cord.
She tells her 311,000 followers: "You literally have one chance to do this and it's at birth".
The Instagram post is an advertisement for CordBank, which stores cord blood stem cells collected immediately after birth with the idea they can be released for the child should they need them for medical treatments later in life.
The process costs $2900 upfront and $225 a year for storage.
"This is a little bit different from advertising clothing or cosmetics," says Professor
Peter Browett.
"This is a huge decision for a family, a quite significant financial decision and ongoing financial commitment.
"This is where many people don't really understand what the issues are or what questions they should be asking."
Cord blood banking is not a new practice in New Zealand but it is appearing on social media feeds now the first company to do it here has started using pregnant influencers to promote it.
It's meant the debate about whether it has merit has fired up again on mummy blogs and parents' Facebook groups and has rubbed some experts up the wrong way.
Browett is a professor of pathology at Auckland University and a consultant haematologist (a doctor who diagnoses and clinically manages disorders of the blood and bone marrow) at Auckland City Hospital.
His view is that the stem cells can only be used to treat a small number of conditions with most of the research still in the laboratory. Stem cells can also be harvested in other ways.
"I think the issue that concerns us is ... how balanced is the information that is being given to parents? When they're pregnant, they're more vulnerable.
"I work in the area, I look after patients having stem cell transplants. Have any of my colleagues banked cord blood? Not that I am aware of and they're people working in the field."
CordBank co-founder Jenni Raynish says her job is to make sure parents have a choice.
"I hope no one ever needs their cord blood ... but if they do, I feel really glad that they have the opportunity to do it. And if people don't want to, I'm okay with that too.
"Like all the other things you decide, like vaccinations - some people feel like those aren't the right things. Some people do controlled crying, some people believe in preschools. It's just all those decisions along the way, you kind of have to reflect on, 'What do I want to do for my kids, for my family?' "
Young blood
CordBank was started in New Zealand in 2002 by Raynish and Mary Birdsall, who was Raynish's obstetrician when she was pregnant with her daughter Valentina.
She tells the Herald on Sunday she read about the practice in a fitness magazine and ordered a kit from a cord bank in the US to collect her daughter's cord blood. But she soon realised it wouldn't get back to the US within the window allowed for it to be processed.
Meanwhile Birdsall had women ask her if cord blood banking could be done here.
Birdsall collected the blood of Raynish's daughter "to see if it was a difficult thing to do" but the blood just had to be "poured down the sink".
"CordBank was born out of that frustration as it just seemed so wrong that local families couldn't do this for their children," Raynish says.
So the pair went into business together.
Raynish's background is in communications. With a Bachelor of Arts in political science, she started Raynish and Partners in 1986 after finishing university. The company provided communications and litigation support for companies.
"It was a different kind of helping. We helped corporates and that was meaningful and I really liked it but having become a mother I became seized by helping babies and families."
Birdsall eventually moved on from the company to concentrate on her own company, Fertility Associates.
CordBank was the first in the world to have cord blood stem cells classified as a medicine, says Raynish. Medsafe audits the company each year.
"When I went to conferences, no one in America could believe that it was a regulated, pharmaceutical, licensed medicine."
Up until last year, CordBank had the monopoly on the service but now another company, Cell Care, has started up. They charge slightly less at $2300 up front and a yearly storage fee of $195.
The blood is banked offshore at its storage facility in Melbourne.
"We have been – and still are – the only New Zealand-based cord blood banking service," Raynish says.
"They just ship everything offshore to Australia which means that access to the cord blood stem cells is governed by Australian laws, not local ones."
Breaking it down
When families register, the company says it provides training for the midwife or doctor in how to collect the blood.
After birth, it is picked up by a dedicated courier service and taken to the company's facility in Freemans Bay, in central Auckland, where the stem cells are harvested and transferred into a metal canister and put into a cryogenic tank at -197C.
Blood stem cells have been used in more than 40,000 transplants worldwide to help rebuild a healthy blood and immune system that has been damaged by disease, says Raynish. And now clinical research is under way to use them for conditions "once thought untreatable", like brain and spinal cord injuries.
Others conditions mentioned on CordBank's website include heart disease, strokes, multiple sclerosis, liver disease and Parkinson's disease.
Browett says stem cells can only be used for a small number of child cancers, such as Neuroblastoma, which attacks the nervous system.
There were just 120 new cases of child cancer a year, the most common being Acute Lymphoblastic Leukaemia. ALL is "very curable" in most cases with chemotherapy, Browett says.
When stem cell transplants are needed, they would always come from a matched donor, like a sibling, rather than using a child's own stem cells, because there was recent evidence the disease may already be present in the umbilical cord blood.
New Zealand legislation restricts the use of privately collected umbilical cord blood to the child from whom it was collected. Families can apply to the Ministry of Health to use it for a sibling.
"That's not the driver for the private banks," Browett says.
"They're really promoting it for protecting your child's health, collecting their cells."
The plot of the Jodi Picoult book and the subsequent movie, My Sister's Keeper tells of a mother, played by Cameron Diaz, having a "designer child" via IVF to treat her leukaemia-stricken older daughter.
Beginning with the harvest of her umbilical cord at birth, over the next 11 years the younger sister donates compatible organs, blood, stem cells and tissue to Kate.
"Saviour siblings" have been born in New Zealand, under the oversight of the Ethics Committee on Assisted Reproductive Technology, but private banks are not needed and the New Zealand Blood Transfusion Service harvests the cells free of charge under the public health system.
The process opens up a whole other can of ethical worms with experts debating whether it treats children as commodities.
New Zealand doesn't have a public cord bank where donated umbilical cord blood can be drawn, but we do have access to other public banks around the world, Browett says.
He has twice reviewed whether we should have one, saying it could benefit Māori and Pacific patients as worldwide banks are Caucasian-focused. But with such a small number of transplants requiring cord blood each year, it was felt there would be no advantage to the population.
There are other ways to collect a child's own stem cells rather than from the cord blood, like from bone marrow, Browett says. Work is also being done to collect stem cells from other tissue.
"It's not as though, if you haven't banked the umbilical cord blood, you don't have any other option."
He stresses clinical trials using cord blood to treat cerebral palsy, as Cordbank promotes on its website, are very much experimental.
"There are studies but it's not an established standard of care or treatment.
"The other things they talk about are more blue sky … Most of the research is still in the laboratory.
"If the research progresses, and this becomes part of care, most of us are not going to have stored autologous (one's own) cord blood but we would anticipate that peripheral blood stem cells will be able to be manipulated and differentiated in similar ways. It's not as though you close the door."
He gets asked by pregnant colleagues and students whether they should store umbilical cord blood.
"It's a personal decision, weigh up the information … they use the term 'private insurance'. I don't really think it is. There are other treatment options available.
"I think when you look at all the information, my advice is you are probably better investing your money in educational funds for your family for the future."
Raynish concedes the clinical studies are overseas.
"The views about what you can use it for and how you can use it ... and the evidence, it's all international evidence ... all coming out of the States or Asia. So people who take views here, and they're entitled to take those views, take them in relation to the area they're involved in."
She says she knows of doctors and midwives who have had their own cord blood collected.
She won't say how many parents have banked their child's cord blood or how many have had it released over the years.
But CordBank promotes two known success stories. In 2007, five years after launch, four-year-old Frances Everall became the first person to use her umbilical cord blood from the bank.
The youngster was not expected to survive an aggressive stage four neuroblastoma. But in 2008 she was officially declared to be in remission.
"I felt like ... it saved her life and that's a pretty incredible thing to be part of even though all we did was store [the cells]," Raynish says.
Also in 2008, Maia Friedlander, then 5, received a re-infusion of her umbilical cord blood. She was born with a form of cerebral palsy which injured her brain and affected her speech, balance and movement.
Her parents said at the time they saw improvements soon after.
But the procedure is not available in New Zealand. Her parents paid for it to be done at Duke University in the US.
"It would still be considered experimental, with further data awaited," Browett says.
Raynish says other families have used their stem cells but wanted to remain private.
"It's tricky to think that the validity of a stem cell source that saved lives, and continues to, gets attacked in New Zealand just because evidentially we are not able to say 'this person, this person and this person'."
Transfusion medicine specialist for the Blood Service Dr Richard Charlewood says the difficulty with cord blood collection is that the volume is quite small.
"The dose required for a transplant is based on the size of the recipient ... This means that as children get older, the cord blood is less useful, and by adulthood, not really useful at all."
He adds the annual incidence of childhood leukaemia is about 50 per million according to the World Health Organisation.
"That means that the parents are paying for something that is really unlikely to be needed."
The New Zealand College of Midwives has a consensus statement on the practice which outlines a number of issues parents should be aware of that mirror what Browett and Charlewood say.
It also says parents need to ask what will happen to the cord blood if the private bank goes out of business and be aware that current collectors' policy is that cord blood is discarded if annual storage payments cease.
Raynish says they work with families who cannot afford to keep up payments. On two occasions, families have had the blood released and buried it in their garden. In other cases where the child has died, the blood has been discarded.
Delayed cord clamping
One of the other main debates is whether delayed cord clamping, when the cord is left attached to the placenta so the blood can flow back to the baby, is possible as well as blood banking.
Raynish says it is.
"We have many clients who have successfully done both. We understand that one minute is the generally accepted time to delay and still collect enough cord blood stems for future use. However this is a decision for each family to make for themselves."
That falls below the college recommendation of at least three minutes.
"This is not possible when blood is collected from the cord to be banked," says college midwife adviser Jacqui Anderson.
"The college is aware that despite claims about potential future uses for stored cord blood, there is currently insufficient evidence to support this practice."
The Royal Australia and New Zealand College of Obstetricians and Gynaecologists' position is similar: "You are not able to delay cord clamping when collecting umbilical cord blood as the cord must be clamped early to capture the most stem cells."
Studies have shown delayed clamping increases haemoglobin levels at birth and improves iron stores in the first several months of life, which may have an effect on developmental outcomes.
This helped Megan Hutchison make her decision when CordBank approached her while pregnant with her first child Teddy in 2019.
The influencer, blogger and company owner was offered the cord blood collection kit if she posted about why she had decided to save her baby's cord blood. If she shared the code "meg", she would also receive the first year's storage free.
After a month of research, she decided it wasn't right for her family.
"I was told that cord blood banking had to be done within the first minute (that the cord could be left for at least 30 seconds, but no more than 60), and that was consistent with DCC guidelines.
"When compared to WHO guidelines and information and advice from our midwife and another midwife (Carmen Lett) I reached out to, it was clear to me that I would not be able to have delayed cord clamping of at least one minute."
It was not an investment they would have made had they not been offered it for free, she says.
"The financial burden of this on other families also came into our decision.
"Given that other families would not be able to afford to do so, and the benefits did not seem great enough to outweigh the benefit of delayed cord clamping (for free), I also felt uncomfortable promoting it as a beneficial service."
CordBank has used The Hits host Laura McGoldrick, ZM host Megan Papas and Kiwi influencer Simone Anderson - among others - to promote the business.
The Advertising Standards Authority is investigating five complaints about Anderson's post.
Under the influence
Tauranga midwife Carmen Lett recently fired up on the issue, telling her 10,000 Instagram followers that using influencers to promote it is guilt-tripping impressionable young mums who can't afford it.
One of her biggest bugbears is a statement on CordBank's website which claims cord blood is normally discarded with the umbilical cord after it is cut.
"They are stating that that blood goes to waste if you don't bank it with them and that is completely untrue," she says.
"So what the gold standard is, is to do delayed cord clamping. With that we know that all the blood from the placenta and the cord goes to your baby. It is vital for stabilising the blood pressure, increasing their liver and kidney function - all those extra platelets and iron cells go to your baby."
Raynish's response is: "If parents do not elect to do delayed clamping or collect cord blood then the cord blood is discarded."
Lett says experts, rather than social media stars, should be the authority when it comes to such an important health issue.
"They have a lot of money behind them and they are doing some pretty big marketing campaigns with some pretty big influencers.
"What about people who can't afford that, which the majority of people can't. That's just making people feel like they're not doing the best for their baby … that stuff really annoys me."
Jacqui Anderson has a similar view.
"Whilst we would always support wāhine and their whānau to make their own informed decisions, we would caution against being influenced by social media and/or advertising and would encourage people to discuss these issues with their midwife, and seek out reputable, evidence-based information, rather than relying on testimonials."
Raynish says the company doesn't discuss the commercial terms of work with influencers but doesn't work with anyone who isn't already a client or wishing to be one.
"Using social media influencers is just modern marketing. We want to raise awareness of what we do, and so we go to where our potential clients are. Instagram marketing not only gets information in front of people who might be interested it also allows us to see real time feedback from people in the form of comments underneath the posts. We love partnering with our influencers so more people are aware they can choose to do this for their babies."
The feedback to Simone Anderson's post has been positive with people who had banked blood sharing stories, while others asked questions, says Casey McPike, of Outspoken, which represents Anderson for social media content creation and influencer marketing.
"Simone and Trent are confident that they've made the right decision to save their baby's cord blood ... but it's a personal choice like so many other decisions to be made during the parenthood journey … pain relief during labour, where to deliver, midwife or obstetrician, how to feed, what cot/pram/carseat to use, what car is safest, if/when to go to work, immunisations, etc."
McGoldrick tells the Herald on Sunday she has been involved with CordBank since 2017, when she learned of the service through a friend.
"I spoke to parents who had used the service, about their experiences and reasons for choosing to use it. One of the things my research efforts showed was that relatively few people knew they could access this service here in New Zealand, so I have worked with CordBank to help create some awareness of their offering.
"As with everything to do with child birth, expectant parents should do their own research, and find out if it's right for them."
Papas declined to comment for this story.
Raynish wonders whether, if she hadn't had to discard her daughter's cord blood stem cells and been able to store it offshore 19 years ago, if she would have started the company here?
"It was pretty painful. And every now and then, Valentina says to me, 'What if I need them?'. I say, 'Look, I think this is your gift to the world'."
