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| Everyone in the Heacock family was a potential donor. Anthony Dones, above, received his life-saving cord blood from an anonymous donor. Ramona Shih and Michael Blitstein, right, donated son Ty's blood to a public registry. |
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Just then a page-long ad throws another choice in their path: Do I bank my baby's umbilical-cord blood?
It's a decision the parents of yesteryear didn't have to make. Today's parents do.
Thanks to medical science, a baby's stem cells can be preserved for posterity. They are the foundation of cells in the blood and immune system.
Question is, should all new parents preserve them? And if so, where?
The answers depend on whom you ask.
Private banks will answer yes, save your baby's cord blood with us — a family member might become ill and need it someday.
Public banks will tell you no, don't pay to store it privately. Your chances of ever using it are next to nil. Better donate to us — we might find a much-awaited match that could save a stranger's life.
Doctors tend to side with public programs, unless someone in the family already has an illness that cord blood could cure. Even then, only one in four related recipients and donors are a good match.
If it weren't for an anonymous donor, Tracey Dones believes her 2-year-old son, Anthony, wouldn't be alive now. At nearly 4 months, he was diagnosed with a rare genetic bone disorder called osteopetrosis.
That's when first-time parents Tracey and Vic Dones thought their infant's own cord blood could be his salvation. After all, the Levittown couple had banked it just in case something like this happened.
"Doctors told us that Anthony's only chance of survival was a stem-cell transplant," said Tracey Dones, 30, a stay-at-home mom. "I don't know what his time frame was. I just knew that time was not on Anthony's side."
His cord blood had the same genetic mutations and was therefore useless. So the search for a donor began. Luckily, in seven days, a match emerged.
Local collection sites
It came from the New York Blood Center — home to the nation's leading public cord-blood bank. The center collects from labor and delivery units at five sites: Brooklyn Hospital, New York-Presbyterian Hospital, North Shore Long Island Jewish Hospital, Inova Fairfax Hospital in Virginia and University Hospitals of Cleveland.
A sixth collection site in New York is in the works, said Melissa Penn, administrator of the blood center's National Cord Blood Program.
Since its inception in 1993, more than 26,000 mothers have donated their baby's cord blood, making transplants possible for 1,600 patients worldwide with about 65 medical conditions.
There are distinct advantages to using cord blood over bone marrow, said Dr. Pablo Rubinstein, director of the New York Blood Center's program. Cord blood is readily available, a match doesn't have to be perfect and fewer complications are likely. Screening of both types of donations is equally stringent. "To be usable, cord blood cannot possibly have HIV, hepatitis or other transmissible diseases," Rubinstein said.
Mothers are asked for their consent before the testing begins.
"I'm glad they followed up in the hospital, because there are so many things you're thinking about during your pregnancy that I didn't take the initiative," said Ramona Shih, an upper West Sider who delivered her first-born, Ty, in September 2002 at New York-Presbyterian.
She had seen a brochure from the blood center in her obstetrician's waiting room, but it got lost in the pile of pamphlets pregnant moms collect. Now, she and her husband, Michael Blitstein, understand the important message.
"You make so many decisions every day — yes or no — and that split-second final decision can make a difference between a mom seeing her child grow up or not," said Shih, 34. "Being a mom myself, there's no greater joy."
In the eyes of Rubinstein, women like Shih are heroes for giving the gift of life. "They are truly doing a very altruistic deed for other people whom they don't know and will never know," he said.
While doctors recommend donating cord blood, they see little value in parents spending money to store it for private use.
"The chance that they're going to use it is so tiny," said Dr. Paul Orchard, an assistant professor in pediatric bone marrow transplantation at the University of Minnesota in Minneapolis. "It's a very rare situation where a child is going to develop leukemia and be able to utilize their own cord blood."
Yet, there are times when private banking makes sense. "If there's a child, for instance, whose sibling has leukemia and they have a new baby coming down the pike, in that sort of circumstance," Orchard said, "we will freeze the cord just in case we need it."
But, he added, "For any given child who might have their cord blood banked, the chance that they will later on have another sibling — who requires that and is fully matched — is very low."
Diane Heacock's family fell into the first category. She was a couple months pregnant with her sixth child when doctors suggested saving the cord blood. It might be needed, they reasoned, because her oldest child had leukemia.
So that's what she and her husband, Henry (Hank) Heacock 3rd, did when David was born in June 1999. They banked with the Cord Blood Registry Inc., one of the many private companies marketing to expectant parents.
Ailing older brother
A year earlier, son Hank 4th had been diagnosed with the disease at age 15, and he eventually took a turn for the worse. Toward the end of a three-year chemotherapy regimen, he relapsed.
"At that point, he needed a bone-marrow transplant. That was the only option to save his life," said Diane Heacock, who lives in Cape May Court House, N.J.
Everyone in the immediate family of eight had blood drawn in hopes of finding a match. Two were compatible — youngest sister Jessica, now 8, and David, 5.
But doctors felt the combination of David's cord blood and bone marrow would be the best source of aid for his brother Hank. In June 2001, David underwent outpatient surgery at Children's Hospital of Philadelphia to remove bone marrow, and Hank received an infusion the same day. The next day, he got the cord blood. After a long recovery, he's doing well.
Father Hank, 56, is glad the health-care team informed the family about this option. The $95 annual storage fee was insignificant compared to the possibility of saving his son's life. "We didn't know anything about it until it was told to us by the doctor and the nurse," he said. "Every day there are children born around the country, and the cord blood is being incinerated or thrown in the trash."
Jonathan Bennett, a 29-year-old father of three young children, takes a different stance. He and his wife, Beth, banked the cord blood from their first child, but not the others. At the time, the Cedarhurst couple viewed it as an insurance policy. Now, Jonathan Bennett attributes their decision to "new parent syndrome," while adding, "None of the doctors wholeheartedly endorse it and say this is something every parent should do."
The Bennetts pay to store the cord blood with Cryo-Cell International Inc. "Since I've already done it, I might as well pay my $50 a year," Jonathan Bennett said.
Tracey Dones is investing the same amount annually to store Anthony's cord blood with the company — but for a different reason. She consulted with Orchard, an expert in Anthony's disease, about using her son's stem cells for research.
"Maybe they could come up with something they've never been able to do before," she said.
Orchard hopes scientists will ultimately have the capability to replace a defective gene causing a blood disorder. "You may be able to benefit somebody," he said, "by giving the cord blood back with the corrected gene."
This would enable children like Anthony to have better outcomes. Each year, 1 in 300,000 newborns develops a severe form of osteopetrosis. More than half become blind during the first year of life. Many lose their hearing, too.
It happens when an overgrowth of bone squeezes off the nerves from the eyes and ears. Left untreated, the skull cannot expand properly, stunting brain growth and leading to retardation and death.
The disease is so rare that Anthony is the only case Dr. Adrianna Vlachos and two colleagues have treated since she joined Schneider Children's Hospital in 2000. "We don't expect to see another one for a few years," said Vlachos, an associate head of the stem-cell transplant program at the hospital in New Hyde Park.
Of the 20 to 25 transplants the three doctors perform a year, between five and seven involve cord blood — an increase from one or two a few years ago, she said. Although the majority are done using bone marrow, there's clearly a shift toward cord blood. The transplant changed Anthony's prognosis for the better.
"He's alive today because of medical waste — a very wonderful thing," Tracey Dones said. "That's why I'm such a big advocate for cord blood."
Information
For more details about cord-blood storage and donation, visit these sites:
New York Blood Center: www.nybloodcenter.org
National Marrow Donor Program: www.marrow.org
A Parent's Guide to Cord Blood Banks: www.parentsguidecordblood.com