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Cord blood: Preserving a lifeline

Collection and storage of newborns' umbilical cord blood for treatment against future disease is rising in popularity

Tuesday, May 19, 1998

By Mary Niederberger

The TV show two years ago was like a message from above for Jeannie Shumovich of Crafton.

A young child suffering from a rare immune system disorder had been saved by umbilical cord blood transplanted from a newborn sibling, the show narrator proclaimed.

Shumovich was pregnant at the time, and doctors had just told her and her husband, Greg, that their 2-year-old son Kevin was suffering from a rare autoimmune disorder. She wondered if Kevin, too, could be treated with her baby's cord blood.

"It almost seemed like it was too good to be true," Shumovich said.

Umbilical cord blood has a high concentration of stem cells, which are the building blocks of all blood cells. More potent than bone marrow, cord blood has been used to treat childhood leukemias, genetic diseases and conditions involving the immune system.

When Christopher Shumovich was born at Ohio Valley Hospital on Nov. 12, 1996, an obstetrician collected his cord blood for storage at a private facility.

Although Kevin, now 4, hasn't yet needed it to treat his polyglandular disease, the family has the reassurance that it's there.

"It will be used as a last resort and God willing we won't ever need it," Shumovich said. "But having it as a safeguard makes me feel better."

Saving the cord blood when her son Michael was born two years ago also provided reassurance for Dr. Carol Couvrette, a North Hills family practice physician who lives in Squirrel Hill.

"I am adopted and my medical history is not known," Couvrette said. "Also, I was an older mom with lots of fertility problems so I don't think my son will ever have siblings."

Paying private companies to process and cryogenically store (freeze) the cord blood of their infants may be logical steps for families with illness or unknown medical histories. Up-front fees range from about $900-$1,500, with annual storage costs around $100.

In the face of aggressive marketing campaigns by 20 some private storage companies, more and more parents-to-be are opting to save their newborns' cord blood - even though the transplants are still experimental.

A growing business

The practice in this fast-growing industry is raising many questions: Who should be saving cord blood? And how should it be stored? By commercial companies to serve those who pay, or by public banks that would serve everyone?

Christopher Shumovich's cord blood provides the closest match possible for his older brother. But as scientists have become more successful in using cord blood to treat disorders in unrelated recipients, there is growing pressure to create public cord blood banks that would benefit society, as regular blood banks do.

That's why Magee-Womens Hospital two years ago abandoned the nation's first on-site program that offered cord blood collection and storage as a regular service to expectant mothers.

Since November 1993, technicians from the Stamford, Conn.-based Biocyte had been at Magee around the clock to collect cord blood after deliveries. The program had cost parents $1,500 up front and $75 a year in storage fees.

Several hundred parents - whose children were just a small percentage of births at Magee - opted for the program. The cord blood is stored only for their use at the Central Blood Bank of Pittsburgh. Biocyte has since gone out of business.

Magee ended that program as the National Institutes of Health Heart, Lung and Blood Institute started to support financially the creation of public cord blood banks, said Dr. W. Allen Hogge, Magee medical director of genetics.

The NIH is directing a $30 million, five-year study to analyze the effectiveness of nonrelated cord blood transplants and to create public cord blood banks.

"The NIH went into this thinking that using this approach would make cord blood available to everyone regardless of their financial needs and would be more effective," Hogge said. "The disadvantage of doing it [with private banks] was that only those people who could afford it would have access to it and the cord blood could be sitting there potentially never to be used while others might need it."

ViaCord Inc. of Boston, which claims to be the largest private cord blood bank, recognizes a need for public banks.

"But we also believe the choice should be there for the patient to store blood for their own family members," said Cynthia Fisher, president of ViaCord Inc.

Hogge said, however, the odds a child will need cord blood are slim.

The NIH estimates that only one in 200,000 children will develop a disease that could be treated with a cord blood or bone marrow transplant.

Private companies, disputing that figure, put the statistics at 1 in 10,000.

Private cord blood storage makes the most sense, Hogge said, for families who already have a sick child, have a family history of diseases that can be treated with the transplants, have a unique mix of ethnic ancestries or in which the parents or child are adopted.

But for others, "it's like buying a $10 million life insurance policy in the likelihood that your child will die within the next five years," Hogge said.

Dr. Steven Neudorf, director of stem cell transplantation at Children's Hospital, agreed.

He believes most parents would be better off investing the money in a college fund than spending it to store cord blood.

Building a public bank

Parents delivering at any hospital in the country can have cord blood collected and stored by a private company.

The dominance of private storage companies may soon change, however.

In 1991, the New York Blood Center, a blood bank in New York City, approached the NIH with a proposal to explore whether unrelated cord blood transplants were a feasible alternative to bone marrow transplants and to build a public cord blood bank, said Dr. Paul McCurdy, the NIH's recently retired director of blood resources.

The NIH funded the project and doctors from the center's Placental Blood Program and those from Duke University Medical Center reported the results of their study in July 1996 that showed cord blood was capable of restoring the bone marrow of unrelated patients with certain diseases.

At the time of the report, more than 200 patients had received transplants from units collected at the public cord bank at the New York Blood Center.

This has been set up as a worldwide resource to provide cord blood for transplant. It is collecting donations only from New York City hospitals at this time to ensure stocks include various ethnic groups.

Those in the public blood banking business don't think it's always appropriate for families to store their cord blood for only their own use.

"It's like everybody donating blood for their own use and not sharing it. What would happen then?" said Dr. Darrell J. Triulzi, medical director for the Institute for Transfusion Medicine, the parent of the Central Blood Bank of Pittsburgh.

"When people pay out of their own pockets and mothers save the blood for their own families, to me, that's really speculative. In my mind, I think some companies have exploited that inappropriately."

Triulzi said it's uncertain if the frozen cord blood can last 10-15 years.

The Central Blood Bank is not part of the NIH's efforts to start public cord blood banks, but local bank officials are looking for ways to become involved.

As part of its $30 million study that began in October 1996, the NIH plans to create public cord blood banks at seven sites: the Dana Farber Cancer Center, Boston; the Fred Hutchinson Cancer Research Center, Seattle; the University of California, Los Angeles; Children's Hospital of Orange County, Orange, Calif.; Duke University Medical Center, Durham, N.C.; University of Minnesota, Minneapolis; and Indiana University in Indianapolis.

Smaller banks are also being formed through private funding.

For example, Cord Blood Registry of San Bruno, Calif., helps to sponsor the Cord Blood Donor Foundation, a nonprofit public bank associated with the University of Arizona.

This bank takes donations on a limited basis, but does not have enough stock to provide cord blood yet to the public.

In addition, the registry has a designated transplant program that allows low-income, high risk (meaning they already have a sick family member) families to bank their blood free, said Kathy Sepesy, a registered nurse from Greensburg who runs local educational programs for Cord Blood Registry.

As part of her educational efforts, Sepesy urges doctors to tell their patients that cord blood collection is an option for everyone, not just those who are high risk.

Her sentiments are echoed by Bonnie Blaxter, of Shadyside, who chose to store the cord blood of her son, Skyler, when he was born two years ago, even though there is no family history of disease.

"I want it to get to the point where every mother and father can be able to make this decision," Blaxter said. "They can't make the decision if they don't know about it. I want them to know that this is a resource that is out there."

Mary Niederberger is a free-lance writer who specializes in children's health issues.

Related articles:

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Now cord blood is saved

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