Legitimate Lifeline?

Inside the local debate over umbilical cord donation.

Cord blood advocates Marc and Sarah Shaffer, with sons Mason and Reilly. (Photo by Jared Castaldi)Four days after his 2009 birth at Lankenau Hospital, Mason Shaffer’s tiny body was wracked with seizures. Over the following weeks, Mason would be in and out of the hospital with infections, problems with his eyesight, swelling in his abdomen, an enlarged spleen and a high white blood cell count. Finally, Mason’s parents were told that his illnesses could be symptoms of a larger, systemic disease.

“Cancer,” says Sarah Shaffer. “The first time the doctors said the word, Marc and I were … Here’s our 5-month-old baby and … I mean, I can’t begin to explain.”

“But in the same moment, we thought, ‘OK, it’s cancer,’” says her husband, Marc. “We could do something about that. We could take Mason to the best doctors and get the right treatments.”

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As it turns out, it wasn’t cancer that was killing Mason. He had something much more difficult to treat: malignant infantile osteopetrosis, a rare genetic disorder. “Every year, of all the births in the United States, only 20 children are diagnosed with MIOP,” Marc says. “Seventy percent die by the age of 6.”

There is only one treatment for MIOP. A stem-cell transplant could wipe out the lethal MIOP cells in Mason’s body—but only if a match can be found. No one in Mason’s family is a match.

Mason’s doctors searched for a match among donated umbilical cord stem cells stored in public blood banks around the country. “The doctors didn’t say, ‘Well, if this doesn’t work, we’ll try something else,’” Sarah says. “It was this or nothing. There were no other options.”

Stem cells found in umbilical cords are medically special. They’re hematopoietic, which means they can create blood and platelets. Cord blood’s stem cells can be used, in some cases, to reboot the body’s blood supply and treat—or cure—diseases. Cord blood cells are also genetically immature, which means they’re biologically young enough to vigorously reproduce, even in less-than-perfect situations. While bone marrow donations need a 10-out-of-10 match, cord blood stem cells need only an eight-out-of-10 match.

Because of those factors, a match was found for Mason. The stem-cell transplant was conducted, and Mason has thrived ever since. Now a happy, healthy child, Mason celebrated his second birthday in March.

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Mason’s stem-cell transplant came from a public bank in New York. “We don’t know who donated the cord blood, and we never will,” says Sarah. “We’ll never be able to thank them for saving our son’s life.”

Unfamiliar with the practice of cord blood donation? There’s a good reason. Right now, after a baby is born and the umbilical cord is severed, it’s usually disposed of as medical waste.

A small percentage of parents opt to privately bank their children’s cord blood with companies like ViaCord, AlphaCord and Xytex. But umbilical cord donations are not done in Main Line area hospitals because there’s no medical or administrative infrastructure to facilitate them. Through the Mason Shaffer Foundation the Shaffers established in 2009, they are looking to change that—and they have powerful backing.

“I’m not going to rest until this is done,” says Dr. Nancy Roberts, system chairperson for Main Line Health’s department of obstetrics and gynecology.

Roberts is speaking about a plan underway to provide the option of umbilical cord donation to every woman giving birth at a Main Line Health hospital. She believes cord blood saves lives. She’s seen cord blood’s stem cells cure genetic diseases and fight certain cancers. And there’s more science to come.

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“Research is being done on using cord blood’s stem cells in a new field of regenerative medicine,” says Roberts. “The word regenerative is important. It refers to nerve cell regeneration. There are neuropathic diseases—cerebral palsy, sickle cell, multiple sclerosis and others—that need nerve cell regeneration to be cured. We are on the precipice of doing that.”

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Doctors would discuss the procedure and its medical benefits with parents. If they agree to donate the umbilical cord blood, consent forms would be signed well before the woman goes into labor. Harvesting kits would be at the ready in every delivery room at Lankenau, Bryn Mawr, Paoli and Riddle Hospitals. A medical courier system would transport the cord blood to the New Jersey Cord Blood Bank, the nearest public facility of its kind. “Everyone I approach at Main Line Health—doctors, nurses, administrators, everyone—says that this is absolutely something we should do for our patients and our community,” Roberts says. “I got a 100-percent positive response.”

But not every doctor is an advocate of cord blood harvesting, donations or the science behind it. “I’ve been hearing about the medical research on cord blood cells for 15 years, and there have not been any scientific breakthroughs,” says Dr. Thomas Bader, chairman of obstetrics and gynecology at Crozer-Chester Medical Center.

Bader says that cord blood cells are, in most cases, not necessary. “The amount of cord blood harvested is so small that you can only use it with children or very small adults,” he explains. “While it is easier to find a match with cord blood than with bone marrow, there is more bone marrow available than cord blood. Adults have plenty of bone marrow in their bodies, and the National Marrow Donor Program has a registry of people willing to donate.”

As for privately banking cord blood with ViaCord, AlphaCord, Xytex or another company, Bader says that it could be useful for parents of an unusual ethnic mix who might have trouble finding a match if a child develops an illness. It also might make sense for parents who already have a child suffering from a genetic disease—or leukemia, cerebral palsy, multiple sclerosis or 80 other illnesses in which hematopoietic stem cells have been used to treat or reverse the disease. “But these are really rare cases,” he says.

And when it comes to widespread cord blood donations to public blood banks, Bader questions two things. Is there a medical need for widespread cord blood donations? And who will pay to set up the infrastructure to make it possible?

“The same federal dollars that support the public blood banks will support the donation of cord blood,” says Roberts. “And, yes, there is absolutely a medical need for this.”

Adds Shaffer: “We have to tell parents that, as they give birth to one life, they could be saving another.”

To learn more about umbilical cord blood banking, visit parentsguidecordblood.org.

7 Things to Ask Your Local Cord Blood Bank

1. What instructional tools are provided for the physician and delivery staff?
2. Are delivery procedures and prices different if the baby is born on a weekend?
3. Is a medical courier required? If so, who is recommended?
4. Does the bank test the collected cord blood for infectious disease markers and bacterial contamination?
5. Does the company take any portion of the cord blood for proprietary purposes, or does 100 percent go into storage?
6. Is the bank accredited by the American Association of Blood Banks and registered with the FDA?
7. Does the contract state that the storage fee is fixed? Or may it increase later?

Source: Parent’s Guide to Cord Blood Foundation (parentsguidecordblood.org)

Umbilical Cord Donation: Who’s Not Eligible?

• Mothers younger than 18 years old.
• Women who’ve survived any form of cancer. Two exceptions may be local skin cancer and cervical cancer (subject to evaluation by the cord blood bank).
• Mothers with positive hepatitis B surface antigen, hepatitis C or HIV/AIDS.
• Women who’ve had an organ or tissue transplant within the past year, an STD within the past 12 months, or malaria less than three years ago.

Other red flags:
• Those with medication-dependent diabetes may not be eligible to donate (though women with gestational diabetes usually are).
• Any history of tattoos or piercings within the past 12 months (subject to evaluation by the cord blood bank).

Source: National Marrow Donor Program

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