Since birth, 10-year-old Carol Mulumba has been shuttled to and from emergency rooms and specialists, fighting a disease that can lead to blindness and organ failure.
But now, according to the family, she’s cured of sickle cell anemia, something traditionally thought impossible.
Her parents praise the wonders of a treatment using stem cells taken from her brother’s umbilical cord blood as the gift that has given their daughter back a normal childhood.
“I feel great, and I can’t wait to go to sixth grade,” said Carol, who lives in Fairfield.
In 2001, doctors told Carol’s family about an experimental technique in which cord blood is frozen at birth and stored to await a day when a patient needs a transfusion.
Since the 1980s, some 20,000 cord-blood transplants have been made to treat some 75 illnesses, including heart disease, cancers, stroke, diabetes and neurological disorders, according to the Cord Blood Registry in San Bruno.
Collecting cord blood does not require doctors to alter the way they deliver a baby and the process is generally regarded as a safe way to harvest stem cells, which are otherwise taken from embryos or adult bone marrow, said Kathy Engle, communications director for the Registry.
Hunting for a transplant match for their daughter, the Mulumbas scoured public cord- blood banks around the country, but without luck. When Lukiah Mulumba became pregnant in 2003, the Cord Blood Registry, a private company with the largest cord-blood bank in the world, offered to store her baby’s cord blood for free as part of a program it offers to some 3,500 close relatives of patients with diseases treatable by cord blood.
The procedure, Carol’s parents were told, was experimental, but promising, and the family decided to try it, said Carol’s father, Abudallah Mulumba.
As Carol grew older, her pain worsened. But analgesics like morphine stopped working.
“I’d say, ‘Sickle cell monster, don’t come to my bed, I’m trying to have a peaceful night,” Carol said. Her growth was stunted and her eyes became yellow and jaundiced. Ultrasounds of her brain showed a stroke was imminent.
In 2008, the family decided to try a cord-blood transplant. The doctors used chemotherapy to force Carol’s bones to stop producing cells so the new blood could catch on.
There is only a one in four chance that a sibling’s blood will be a match, according to the Registry. But after a month, Carol’s blood work showed 100 percent healthy blood cells.
She spent another 6 months in bed, time in which her eyes cleared and her pain went away, said her father. Although she had to wear a surgical mask at first, she was allowed to go back to school in 2010.
“It took time,” said Carol, who said the hardest part of the process was being quarantined from most visitors. “I’m not short anymore,” she added.
While it’s not entirely clear that cord blood is what saved Carol, her recovery is another anecdotal victory for a medical procedure which has yet to gain universal acceptance.
“One of the reasons we are doing this is to play a part in the education of the public,” said Abudallah Mulumba, who is a nurse.
Currently, 95 percent of cord blood is discarded, according to Mulumba, but advocates of the procedure say the extent of its uses are still unknown to science, and that one day, saving umbilical cord blood will become a universal practice.
Cryo storage up for debate
The Cord Blood Registry in San Bruno is the world’s largest collector of umbilical cord blood. Its reinforced, disaster-proof warehouse is strategically stored in earthquake- and tsunami-free Tucson, Ariz., where some 375,000 cord-blood samples from around the world are cryo-preserved at hundreds of degrees below zero in liquid nitrogen-filled containers double-backed by battery power.
But the usefulness of this ice-encased database of human cells is a matter of debate.
The odds that cord blood donors will one day need their own, or a sibling’s cord blood, range from one in 1,000, to one in 200,000, depending on which study you read.
“You can toss around all the statistics you want but it should be a choice that’s left up to the family,” said Kathy Engle of the Cord Blood Registry.
The registry could not say how many samples it has defrosted for transplant, although in 2007, it was reported that after 17 years in business, the Registry had only released 53 units for treatment.
Considering that clients typically pay $2000 for the initial capture and storage of the cord blood, and another $150 per year for storage, private cord blood companies have come under fire for profiting.
Although debated, in recent years state law has swung in favor of storing cord blood — but with public, not private banks.
In September, state legislators passed a bill that tasks the University of California system schools with collecting some 5,000 cord blood samples per year for clinical use and research The collection is primarily being paid for with a $2 fee hike on certified birth certificates that’s expected to raise $3 million.
The growing popularity of cord-blood treatments and research is due in part to the fact that cord-blood stem cells are 100 times easier to match with patients than bone marrow stem cells, according to Cord Blood California.
Storing cord blood with a public bank is free, thanks to federal funding, but donors are highly unlikely to ever see their own sample — meaning they lose access to a guaranteed match, or a high-potential match for an immediate family member. Further, Engle said cord blood from a public bank costs patients around $35,000 to access — if they can find a match.
In the Bay Area, there is no public donation system, so private storage is the only option for locals, Engle said.
Typical cord costs
Private Cord-Blood Bank
- $2,000: For capture and first year of storage
- $150 Per year for subsequent annual storage
Public Cord-Blood Bank
- $0: For capture and storage
- $35,000: For access to cord blood
- 20,000: Number of cord blood transfusions given thus far
Source: Cord Blood Registry