PREGNANT, PAUSE
Influencers under fire over health message
The Advertising Standards Authority is assessing complaints about pregnant influencer Simone Anderson over an Instagram post she made about storing the blood from her baby’s umbilical cord.
Anderson was hired by CordBank, a company that supplies kits for midwives to collect the blood, which is then picked up by a courier and taken to the company’s Auckland facility for storage. The company says cord blood stem cells can be used to treat blood disorders and clinical research is showing progress in regenerative medicine for things like brain and spinal cord injuries.
But experts debate the benefits of the practice.
In Anderson’s post, she is pictured with husband Trent cradling her stomach. She has declared the post is an advertisement.
“Cord blood is a valuable source of stem cells, which are a perfect DNA match for your baby,” she says.
“By saving these stem cells it gives them the chance to survive many illnesses and conditions — now and into adulthood.
You literally have one chance to do this and it’s at birth so we absolutely want to take this opportunity.
“Is cord blood banking something you have ever looked into? Would love to hear your thoughts.”
The Hits host Laura McGoldrick and ZM host Megan Papas are among other high-profile mums to have also posted about the company, but complaints have only been made about Anderson.
The ASA said there were five complaints in total.
Chief executive Hilary Souter said the complaints were being processed with the chair of the complaints board still to rule whether the advertisement contained anything that could be a breach of the ASA’s codes. “Once this assessment has been made, the complainants, the advertiser, and the influencer will be advised either: that there are no grounds for the complaints to proceed or the complaints have been accepted for adjudication and inviting the advertiser and influencer to respond to the issues raised in the complaints. All relevant information is put before the complaints board and a decision made.”
Casey McPike, of Outspoken, which represents Anderson for social media content creation and influencer marketing, said Anderson had met CordBank owner Jenni Raynish to learn about the service “and the worldwide use of cord blood in treatments and trials for an increasing number of diseases and conditions”.
She said Anderson, in her third trimester, and her husband Trent Forsyth had been aware of the benefits and were planning to do it for their son.
Tauranga midwife Carmen Lett has been outspoken on social media about the company’s choice to use influencers to sell the product, saying the benefits don’t outweigh delayed cord clamping.
“It’s guilt-tripping mums into making them feel terrible about a choice that they can’t even make because most people can’t afford it,” she has told her 10,000 followers. McGoldrick said she had 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 childbirth, expectant parents should do their own research, and find out if it’s right for them.”
Papas declined to comment. Jenni Raynish, owner of CordBank said: “We won’t be commenting on any of the complaints while they are still before the ASA.”
Is cord blood banking something you have ever looked into? Simone Anderson
The pregnant influencer looks down at the product, her husband cradling her burgeoning belly. Clad in crisp white pants with immaculate makeup and slickedback 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 that the first company to do it here has started using pregnant influencers for promotion. It’s meant the debate about whether or not 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 be used to treat only 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 being given to parents? When they’re pregnant, they’re more vulnerable. Have any of my colleagues banked cord blood? Not that I am aware of and they’re people working in the field.”
But 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.”
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 read about the practice and ordered a kit from a cord bank in the US to collect her daughter’s cord blood but soon realised it wouldn’t get back within the window allowed for it to be processed.
Birdsall still collected the blood “to see if it was a difficult thing to do” but it 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. 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. Birdsall eventually moved on from Cordbank to concentrate on her own company, Fertility Associates.
Until last year, Cordbank had the monopoly on the service but now another company, Cell Care, has started. It charges slightly less at $2300 up front and a yearly storage fee of $195. But the blood is
banked offshore at its storage facility in Melbourne.
When families register with Cordbank, the company 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 stored.
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 clinical research is under way to use them for conditions “once thought untreatable”, such as brain and spinal cord injuries. Other conditions mentioned on Cordbank’s website include heart disease, strokes, multiple sclerosis, liver disease and Parkinson’s disease.
But Browett says stem cells can be used for only a small number of child cancers, such as Neuroblastoma, which attacks the nervous system.
There are just 120 new cases of child cancer a year, the most common being Acute Lymphoblastic Leukaemia — but that is “very curable” in most cases with chemotherapy, says Browett. 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 as 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.
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, the younger sister, over the next 11 years, donates compatible organs, blood, stem cells and tissue to her sister.
“Saviour siblings” have been born in New Zealand 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 is treating children as commodities. New Zealand doesn’t have a public cord bank where donated blood can be drawn but we do have access to others around the world, Browett says.
He has twice reviewed whether we should have one, saying it could benefit Ma¯ori 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, such as 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 that clinical trials using cord blood to treat cerebral palsy and other diseases, as Cordbank promotes on its website, are very much experimental.
“They use the term ‘private insurance’. I don’t really think it is. There are other treatment options available . . . my advice is you are probably better investing your money in education for your family for the future.”
Raynish 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, 4-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.
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.
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 and the older a child gets, the more is needed.
He adds that 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 that 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.
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 and that one minute is the generally accepted time to delay and still collect enough cord blood stems.
But 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 advisor 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 would post about why she had decided to save her baby’s cord blood. If she shared the code “meg”, Hutchison would also receive the first year’s storage free. But after a month of research, she decided it wasn’t right for her family. “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.
“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, influencer Simone Anderson and other well-known Kiwis to promote the business. The Advertising Standards Authority is investigating five complaints about a post from Anderson.
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. Raynish says the company doesn’t work with anyone who isn’t already a client or wishing to be one.
McGoldrick tells the Herald on Sunday she has been involved with Cordbank since 2017, when she learned of the service through a friend.
“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. Raynish wonders whether, if she hadn't had to discard her daughter's cord blood stem cells, if she would have started the company here. “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'.”
CordBank was born out of that frustration as it just seemed so wrong that local families couldn’t do this for their children.
Jenni Raynish, Cordbank founder
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.
Professor Peter Browett