Parents-to-be weigh decision on saving umbilical cord blood
by Harris Meyer
Gretchen Jacott was conscientious about every aspect of her pregnancy from exercising to eating organic foods, so when she and her husband read a pamphlet on privately banking the baby’s cord blood, she says it was an easy choice. The umbilical cord contains stem cells that can help reconstitute bone marrow and have proven to be effective in treating approximately 80 diseases, including a number of cancers and genetic, immunologic and metabolic disorders.
Cord blood stem cells are also being used in experimental therapies, called regenerative medicine, to repair or regenerate tissue in patients with heart disease, stroke, cerebral palsy and spinal cord injury, among others.
“[I thought] God forbid if something comes up in five or 10 years, our unborn child would benefit and it would only cost a few hundred dollars a year for a miracle,” Jacott says.
Parents-to-be are faced with the emotional decision to store cord blood privately for their own family, donate it to a public bank so it's available to others in need of transplants or — the option chosen by most parents — do nothing.
Of the more than 4 million births each year in the U.S., more than 90 percent of the cord blood cells are discarded, according to Steve Grant, co-founder and executive vice president of Cord Blood Registry, the largest private bank in the U.S. "It's a resource that's thrown away way too often," he says.
Before making a decision, experts recommend parents-to-be consult their obstetrician. Jacott, who's from Santa Monica, Calif., says she doesn't recall being counseled about public banking, but is now grateful she chose to privately store her daughter's cord blood at Cord Blood Registry. Four days after Jacott's daughter, who is now 9, was born, the infant suffered a massive stroke, leaving her partially paralyzed on her left side and causing significant motor and speech issues.
More on donating
About a year-and-a-half ago when Gretchen heard about a Duke University study about children being infused with cord blood stem cells, she decided to take her daughter for the experimental procedure. Dr. Joanne Kurtzberg and her team infused the little girl with her own stem cells that had been frozen for eight years.
Gretchen says she started seeing notable differences in her daughter within the first 48 hours after the procedure. "Days had past and she started to incorporate her left side, and after months her gait improved," she says. "One exciting improvement was when she scaled three rungs of the monkey bars, left hand over right. Previously, she was unable to hold onto the bar at all with her left hand. It was nothing short of a miracle."
Kurtzberg, a pioneer in cord blood transplants, stresses it's too early to say whether Jacott's daughter or other patients actually benefit from these experimental regenerative therapies, which have also been used for people with Type 1 diabetes, Crohn's disease and bone disease. She believes public banking ought to be a family's first choice, unless someone in the donor's family has an illness that could be treated with a cord blood stem cell transplant. She and others point out that if a child's banked stem cells contain the disease he or she is being treated for, such as leukemia, they can't be infused into the child.
The American Academy of Pediatrics warns that parents may have been encouraged by their doctor to bank privately as a form of "biological insurance" and that families may be vulnerable to the emotional effects of private cord blood banking marketing. "If parents don't have the financial means to privately bank their baby's cord blood, they shouldn't feel they're depriving their child of the only chance to save their child's life — if that child developed a serious disease," says Kurtzberg, who helped write the AAP's policy statement that encourages public donation. The AAP says there are no accurate estimates on the likelihood that children will need their own stored cord blood, noting that estimates range from 1 in 1,000 to more than 1 in 200,000.
On the horizon
While umbilical cord blood is a valuable source of stem cells for treating many diseases, some cords contain too few stem cells to be usable by themselves. Researchers at the Children's Hospital & Research Center Oakland recently discovered the placenta, delivered after a baby's birth, contains up to five times more stem cells than the cord blood. Today, transplants using cells from more than one umbilical cord often involves a more difficult matching process.
"There aren't enough stem cells in one unit of cord blood to transplant in an adult," says Frans Kuypers, Ph.D, a senior scientist at the Oakland center and one of the study's lead researchers. "This will allow a much larger population of stem cells, which is important for whoever needs it."
They've developed a new technique to profuse the placenta with a fluid that replaces the cord blood. "[This] teases the stem cells out of the placenta," Kuypers says. They're hoping this harvesting technique will win approval from the FDA, which will make sure the method is safe and effective for patients.
But more research is needed to determine whether placental stem cells can be used in transplants just like cord blood stem cells. For now, transplants using placental stem cells remain experimental, and standard treatment is probably several years off, Kuypers says.
"The good thing about this is we essentially piggyback on cord blood banking," he says. "If you store your cord blood in a public or private bank, you would just say, 'Store my placenta, too.' Having more [stem cells] means more people can be served."
But Grant contends there's a powerful case for parents to store their baby's cord blood in a private bank. "Diseases come at any time at any age, and you never know if you or someone in your family is going to need it," he says. At the same time, there's no guarantee parents who donate to a public bank can ever obtain their own baby's cord blood if need be because it could have been discarded for not containing enough cord blood, given to research or used for a transplant. "When a public bank releases a transplant, they charge about $30,000 to $35,000 to the patient," says Frances Verter, founder and executive director of the Parent's Guide to Cord Blood Foundation, a nonprofit educational group that supports both private and public banking. Medical insurance generally will cover the cost for standard therapies, she adds.
While private banking can cost more than $2,000 for the initial collection, transportation and processing — and anywhere from $100 to $200 for each year of storage — public banking is typically free to the donor. Nevertheless, Verter estimates 90 percent who are banking opt to save it for their family. She says this could be in part because for many parents who want to donate their child's cord blood, their options are limited.
The National Marrow Donor Program, which runs the national matching program for cord blood and blood marrow donations, says there are only 15 public banks nationwide that participate in the NMDP network and approximately 200 hospitals and birthing centers affiliated with those banks. Kathy Welte, director of the NMDP's Center for Cord Blood, says these banks cover the cost to collect, test and store donated cord blood. "The average cost to the public bank is between $1,100 and $1,500 per cord blood unit," she says.
Currently, NMDP's Be the Match registry has 150,000 total cord blood units. In comparison, Cord Blood Registry, just one of approximately 30 private banks, has 300,000 cord blood units. Another reason parents aren't opting for public banks may be due to a lack of awareness. Only 22 states require doctors to inform patients about their banking options. "Although we applaud education campaign efforts, these laws do little to expand national inventory of cord blood units," Welte says. "A comprehensive cord blood program within a state should include funding for education, collection and storage of donated cord blood units." A pending bill in Congress would require doctors to inform expectant parents about private and public banking.
More education would enable parents who are having a baby at a non-participating hospital to learn that they may still be able to donate. Cryobanks International, a public and private bank that participates in the NMDP network, accepts donations primarily for transplantation, while LifebankUSA, a private bank, accepts public donations mainly for research. Both companies accept donations on a limited basis every month and recommend calling first.
Private banks, except for the two mentioned above, differ because they send cord blood collection kits to parents anywhere in the country. The doctor or nurse collects the cord blood from the clamped-off umbilical cord after the birth. The family or bank arranges for a medical courier to ship the kit to the private bank. The blood is tested for infectious diseases, much like it would be if it was donated, minus an HLA typing test, which is used to match patients and donors for bone marrow or cord blood transplants.
Some banks also conduct tests to provide an assessment of the concentration of stem cells. If the blood passes the tests, it's then cryogenically frozen and stored.
Verter says cord blood banking is a personal decision and there's no right choice. Since May 2005, all cord banks have been regulated by the FDA, which does surprise inspections for quality assurance, including making sure banks are screening for communicable diseases. "Parents should make sure private banks have an AABB accreditation," Verter says, because they conduct an inspection every two years to make sure they're following standard operating procedures.
A study co-authored by Verter, who lost her daughter Shai in 1997 to cancer, says there's a 1 in 1,666 chance that a person will have a stem cell transplant by age 20, but a 1 in 217 chance that person will have one in their lifetime. "We all know at least 200 people," Verter says. "Either bank publicly or privately because someone you know will need a transplant."
Jessica Hahn, now a healthy 21-year-old college student in Kansas City, Mo., is thankful for public donations. At 12, she was diagnosed with a potentially fatal pre-leukemic condition called myelodysplastic syndrome. "My family and I were stunned, but I had gone through cancer before, so I knew I could survive it again," says Hahn, who had received a successful bone marrow transplant for a bone tumor four years earlier.
Within a week her doctor at Cardinal Glennon Children's Medical Center in St. Louis found matching cord blood stem cells at the St. Louis Cord Blood Bank. Hahn underwent chemotherapy to kill her diseased marrow, and received two syringes of cord blood stem cells to regenerate healthy marrow.
"It's definitely the gift of life," says Hahn, who did an internship this summer at the St. Louis Cord Blood Bank and plans to work in the field of genetics and cord blood banking. "There was no chance for me to be here today otherwise."