Scientist Who Lost Daughter Champions Cord Blood

Saving umbilical cord blood from childbirth is a growing practice, and those in the field credit a former NASA astronomer with raising national awareness about cord blood's potential for providing life-saving stem cells.

“There’s been a huge upswing in interest in cord blood banking,” said Danielle Winner Koontz, a childbirth educator and doula—or labor assistant—in Catonsville, MD. “The conversation comes up in every single [childbirth] class now.”

A newborn’s umbilical cord and placenta contain about two ounces of blood teeming with millions of precious stem cells--immature blood cells that can grow into different kinds of tissues. Stem cells are used to treat leukemia, lymphoma and other cancers, and a growing list of diseases.

Usually, the placenta and umbilical cord are thrown away after childbirth. An increasing number of parents are chosing to collect umbilical cord blood and bank it for a child in case of a future medical catastrophe or donate it to a public bank for a patient in need of a matching transplant.

If more parents know about cord blood banking today, it is due largely to the efforts of Frances Verter, a former astronomer at NASA who established a foundation to educate the public about cord blood after the death of her daughter.

Not even a year old, Shai Verter developed rhabdomyosarcoma, a rapidly growing and highly malignant cancer of connective tissue. Chemotherapy and radiation therapy pushed the cancer into remission but also wiped out Shai’s bone marrow, resulting in leukemia.

“We had a very hard time finding a donor” for a bone marrow transplant, said Verter. “She had a very unusual HLA [tissue] type. There wasn’t a match for her in the United States.”

By the time a matching donor was found in the United Kingdom, Shai was very ill. She improved briefly until slumping back into leukemia and died on Sept. 2, 1997, two months short of her fifth birthday.

Within a month of Shai’s death, Verter was pregnant again. She was determined to ensure that this baby would never want for a bone marrow donor in the future.

At the time, the area of umbilical cord blood banking was new. Only a handful of tissue banks stored cord blood for individual families. Verter—a Princeton-educated astronomer—immersed herself in laboratory accreditation standards and the emerging field of regenerative medicine as she investigated cord blood banks for her baby.

“I discovered that the literature that cord blood banks gave out was pretty puffy, and I talked to sales people who couldn’t answer medical questions,” she said. “To this day, banks will mislead people by saying they’re registered with the FDA. Big deal, all blood banks are registered with the FDA.”

Verter found a place to bank the cord blood when her daughter, Shoshana, was born in 1998. Later that year, she started a web site—Parent’s Guide to Cord Blood—that she tended to part-time in between raising a baby and working as a programmer supporting climate research at NASA’s Goddard Space Center in Greenbelt, MD.

“All I was doing was sharing what I documented with other parents,” she said. “It’s the scientist in me. I’m good at documenting. That’s most of what I did at NASA, documenting things.”

At her web site, Verter compiled information about the services provided by a growing directory of cord blood banks, as well as resources about transplant medicine and a searchable map of donation sites. She developed a brochure that has been translated into eight languages.

During the years since, Verter has gained recognition as an expert on cord blood and stem cells. She has published on the subject and regularly attends conferences and gives presentations on cord blood banking.

In 2006, facing a layoff at NASA, Verter formed a nonprofit and put together advisory boards to create the Parents’ Guide to Cord Blood Foundation. She has worked full-time as its director since 2007. Verter runs the charity from her home near Olney, MD, which she shares with Shoshana, 13, and another daughter, 11-year-old Gavrielle.

Today Verter’s web site gets about 500,000 visits a month. Nearly a million American families have banked umbilical cord blood, she said.

“When I started the web site, I had no idea cord blood banking would take off as it did,” Verter said. “It was a total surprise that I never expected. It’s the classic example of being the right person in the right place at the right time.”

“It’s really remarkable how cord blood banking has all changed in the last few years,” Koontz said. “People are much more interested in banking cord blood, either for themselves or donating it to somebody who needs it.”

Calling Verter's website a “vital tool for increasing public awareness about cord blood banking,” last November the National Marrow Donor Program honored her with a Lifetime Award at its annual meeting in Minneapolis.

"She's the Mother Theresa of cord blood banking," said Marion Welch, medical coordinator LifeLine Cryogenics, a blood bank based in Stamford, CT.

Welch, who has known Verter professionally for about a decade, has served on the foundation board for about five years.

"It's an invaluable web site," Welch said. "Fran has the scientific background to bring this complex information together and make it useful for professionals in cord blood banking as well as members of the public."

The Parent's Guide to Cord Blood site helps separate sound science from marketing hype, she said.

Verter is "a watchdog for the industry," Welch said. "She really remains objective. She wants people to weigh all the options and make decisions based on the needs of their particular family. People want to be educated, not sold."

Verter’s currency continues to grow as she receives invitations to speak at stem cell conferences around the world and spread the gospel of cord blood banking.

“The funny thing is that I’ve been more successful than I ever would have been as an astronomer,” she said. “I would have just been another astronomer, where here I am playing a unique role.”