Nine years ago, when Sarah Willey was pregnant with her oldest son, Cole, she and her husband made a series of decisions. The Ellicott City couple discussed where she would give birth, what they would name their child and whether they would "bank" his cord blood.
Cord blood banking is the process of reserving and storing a newborn baby's umbilical cord blood for possible future uses. Similar to a bone marrow transplant, cord blood stem cells can be used to treat more than 80 conditions, including immune system and metabolic disorders and blood-borne cancers like leukemia and lymphoma.
"I'd read a bunch of articles about the potential health benefits [of banking cord blood]. While I hoped, obviously, that none of these things would ever happen, I figured more and more uses would be developed for cord blood," Willey says. "They were doing so much research — even nine years ago when I made the decision."
Like Willey, other prospective parents must consider the possibility of using cord blood in the future — and decide now whether and how to store it.
Cord blood cells are also being studied for "regenerative" treatment of conditions such as type 1 diabetes, cerebral palsy, hearing loss and autism — however, there is not yet any significant clinical trial data proving the success of regenerative treatments.
The first cord blood transplant procedure was performed in France in 1988. By 2013, more than 30,000 transplants had been conducted worldwide. Currently, the Cord Blood Registry (CBR), a large cord blood bank headquartered in California, reports that it has saved cord blood stem cells for more than half a million babies.
By age 70, according to the CBR, one in every 217 Americans will need a stem cell transplant (with the cells coming from any source, not necessarily the patient's own cord blood). However, in 2012, the American Congress of Obstetricians and Gynecologists put the likelihood of a unit of cord blood being used for treatment of a child or family member at 1 in 2,700.
"With transplant medicine, what these stem cells do is generate an entirely new immune system for the patient," explains Kristen Swingle, vice president of laboratory operations for the CBR.
Prospective parents have several options.
They can donate their babies' cord blood to a public bank, where it can be used by anyone who requires stem cell transplant therapy and is a match. There is no cost to donate.
Or families can pay to store the blood in a private bank such as the CBR, Cryo-Cell International in Florida or ViaCord in Massachusetts. Although stem cell transplants require only that the cells be a match (they need not be from the person being treated), the regenerative treatments currently in clinical trials require patients to use their own stem cells.
If they choose not to donate the blood to a public bank or pay to store it in a private bank, the cord blood cells will be discarded.
The Willeys chose a private bank, contracting with the CBR. To bank the cord blood of one child, the CBR's initial fee is $1,650 with a $150 annual fee. Prices vary somewhat from bank to bank, and family plans — with discounts for additional children — are usually available.
In Maryland, hospitals and obstetricians are legally required to distribute information about public donation of cord blood. Some local experts also believe that private bank donation could be valuable for families who can afford it.
"My take is that if it's not a terrible financial hardship on the family, I would look at it like buying a sort of insurance. If you need it, it's wonderful that you did it. But if you don't [bank the blood], you can't get it," says Dr. Victor Khouzami, an OB/GYN at Greater Baltimore Medical Center.
Though Dr. Khouzami does not discourage private cord blood donation, he also says that families who are considering banking strictly for potential use as a bone marrow alternative to treat blood-borne cancers should use public banks, not private.
The American Academy of Pediatrics recommends public donation instead of private banking, noting that in many cases, the building blocks causing potentially treatable conditions may be "stored" in the cord blood stem cells, so treatment with the child's own cord blood would not work.
The safety and track record of private banks is an important consideration, especially given recent revelations about poor storage conditions and sample management. An April 2014 investigation published by The Wall Street Journal brought to light numerous concerns about equipment cleanliness, testing of cord blood samples for diseases and overall mismanagement of the samples. In some cases, cord blood was rendered unusable due to the storage conditions.
Public banking can be challenging, though, due to the stringent application process.
"I'd like to see every patient do public cord blood banking. But the national donor program has a strict policy with pages of questions that need to be filled out," says Dr. Robert Atlas, chair of the department of obstetrics and gynecology at Mercy Medical Center. "The other issue is they have very strict criteria in the amount of blood collected and the number of stem cells that are in each sample in order to bank it."
Public banks have high blood volume requirements; Swingle explains that this is because high volume correlates with a high cell count. Publicly banked cells are often used for transplant treatments in adults; these procedures require a fairly high number of cord blood cells to be effective.
Ideally, private banks also want large numbers of cells, says Swingle, but they do not have the same requirements because the cells they collect may be used for different types of therapies. Still, she says that the CBR does notify families if the collected cells fall under a certain threshold.
"Clinically today, the application of stem cell treatment from cord blood is pretty limited," says Dr. Khouzami. "But there is a lot of work being done and a lot of hope for the potential for the future. It could be a wonderful world."
For Willey, the banking process seemed easy.
"At my doctor's office, they had an application," she says. "You fill out paperwork, someone calls you and asks you questions to set up your account and they send you a box you put in your bag you pack for the hospital."
Once at the hospital, she and her husband, Doug, gave her physician the box, which was used to collect the blood. Her husband then called the CBR and the company sent someone to pick up the package.
Two years after Cole was born, the Willeys had another son, Chase. Though they have not needed to use Cole's cord blood, they chose to bank Chase's cord blood cells, too.
"Hopefully we'll never need it," says Willey. "But it is good to know we have it."
Qualifications for public cord blood banking
To donate cord blood to a public bank, pregnant mothers-to-be and babies must meet certain criteria, explains Dr. Robert Atlas of Mercy Medical Center. This includes:
• The mother must be 18 years or older
• The pregnancy must reach at least 34 weeks
• The mother cannot have HIV/AIDS, hepatitis B or hepatitis C
• The mother cannot have had cancer
• The mother typically cannot be on prescription medication for diabetes (though this excludes gestational diabetes)
• The mother cannot ever have had a transplant
• The mother cannot have received multiple tattoos from a multi-use needle in the 12 months prior to giving birth