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| 8/1/2008 | Email this article • Print this article |
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Brandie Don Forsythe enjoys a summer day at the beach with her daughter Alice. Alice received an infusion of her own stem cells and is making great strides in overcoming the effects of her cerebral palsy.
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Jennifer and Angus Sawyer researched cord blood banking before the birth of their son Thaddeus. |
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Cord Blood Banking: The New Insurance for Your Family's Health?
By Hohna Hartley
When Brandie and Jason Don Forsythe of Durham, N.C., were expecting their first child, they had no idea what was in store for them. After a healthy pregnancy and an uncomplicated delivery, their daughter Alice was born. Alice appeared to be in good health in her first months of life, but at 6 months of age, the couple noticed some development and motor skill delays in their daughter. At 8 months, Alice underwent an MRI, which revealed that she had brain damage caused by a lack of blood or oxygen to the brain when she was in the womb. The final diagnosis? Moderate to severe cerebral palsy.
The day after Brandie and Jason received this shocking news, Brandie's sister e-mailed her an article about a doctor at Duke University Hospital. At the time, Dr. Joanne Kurtzberg was the only doctor in the country willing to infuse brain-injured children with their own cord blood stem cells. Parents around the country were bringing their brain-injured children to Kurtzberg, asking her to treat them with stem cells taken from the children's umbilical cord blood, which the parents had saved with the help of private cord blood banks.
During Brandie's pregnancy, the couple had been asked by Jason's father if they had considered banking Alice's cord blood. The expectant couple looked into it, but decided against it. The cost was more than they were willing to pay, and their family's generally good health history gave them no compelling reason to expect that their baby would benefit from the cord blood. But Jason's father, a quadriplegic due to a spinal cord injury, had a personal interest in stem cell research due to his own health condition, and was hopeful that the new baby's stem cells could someday be of help to him. With the couple's consent, he paid for his granddaughter's cord blood to be banked.
Thanks to her grandfather's persistence, Alice was able to be treated with her own cord blood stem cells on May 15, 2007, making her the eighth child in the United States to undergo the procedure. Some children who underwent similar treatment had very quick results, including one child who showed considerable speech progress within a week of receiving the cord blood, and a nearly complete disappearance of cerebral palsy symptoms within eight months after the treatment. For Alice, whose cerebral palsy was in the moderate to severe range, her progress since the procedure has been slower, but steady.
More than a year after receiving the cord blood, Alice continues to make developmental strides that belie her health diagnosis. According to Brandie, Alice regularly surprises her physical therapist with her accomplishments. For example, Alice has almost complete head control, an ability that children with Alice's condition often never gain in their lifetime, even with the help of therapy.
"We just have hope," said Brandie, "that whether it's physical therapy or the stem cells, that she continues to improve." Alice is still gaining muscle strength in her neck, back and trunk, and though she isn't using words yet, her verbal abilities have increased considerably. Recently, Brandie and Jason have noticed that Alice's eyes, which used to be crossed, are correcting as her muscle control increases.
Banking on the Future Of Stem Cell Research
Brandie and Jason banked Alice's cord blood with CBR, or Cord Blood Registry, a private bank headquartered in California that serves families in 82 countries around the world. CBR spokesman David Zitlow explained why cord blood stem cells can prove valuable to families. "There is a very diverse population of very effective stem cells in the cord blood that have proven the ability to turn into almost every type of cell and tissue in the body," said Zitlow. "So it really holds a tremendous amount of promise for therapeutic use now and in the future ... What we've seen is that these stem cells from the cord blood seem to have the ability to migrate to the brain and induce healing."
CBR works with an advisory board of medical professionals specializing in obstetrics, blood and tissue banking, oncology, transplantation and medical ethics. The organization's scientific director is Dr. David T. Harris, a recognized expert in the field of stem cell research who has addressed Congress regarding the regenerative treatment potential of cord blood stem cells.
"The greatest benefit for families is that they have a ready source of stem cells, should their child or any other family member need a stem cell transplant in the future," said Danielle Morris, a spokeswoman for Xytex Cord Blood Bank, the only such facility operating in Georgia. "Currently, about 80 diseases can be treated using stem cells - diseases like cancers, genetic disorders, immune deficiencies, so it's just great to be able to have almost like a biological insurance just in case something were to happen."
Stem cells have already been used to treat conditions such as sickle cell disease, leukemia, lymphomas, malignancies and immune system disorders. Currently, the use of cord blood stem cells for regenerative treatment of conditions such as type one diabetes and brain injury is being studied. According to Zitlow, a clinical study on the use of cord blood stem cells for treating cerebral palsy is in its early stages at Duke University under the direction of Kurtzberg, the same doctor who treated Alice Don Forsythe for cerebral palsy.
"We know that the child's stem cells would be a perfect match for that child, so it's believed that the child's own stem cells could be used for virtually any disease," Morris added.
Educate Yourself About Banking Options
As amazing and powerful as umbilical cord stem cells appear to be, surprisingly, doctors may not be quick to encourage expectant parents to bank their child's cord blood. As Brandie tells pregnant friends about the treatment Alice has received, they warm to the idea of banking their newborn's cord blood. But, according to Brandie, those same friends have been talked out of the banking idea by their doctors, who cite the cost and the unlikelihood of needing to use the stem cells as reasons to avoid banking.
However, that may change in the near future - at least in Georgia, where a state law, the Saving the Cure Act, was passed in 2007. The new law established the Newborn Umbilical Cord Bank and requires doctors to inform their patients of their cord blood banking and donating options before the third trimester. Doctors have been given until June 2009 to begin educating their patients on the subject. (Cord blood banking is private banking which families pay for so that their child's cord blood will be available for them if necessary. Cord blood donating is a free public service that saves cord blood so that it may be used by others for research or treatment.)
Until then, the onus is primarily on parents to research their cord blood banking and donating options. Jennifer Sawyer, a Savannah mother of one, learned about cord blood banking when she and her husband were watching an evening news show on television. The idea appealed to Jennifer, so when she and her husband were expecting their son Thaddeus, she talked to her doctor about it. Her doctor had brochures on hand, which she gave to Jennifer, who then did her own research online and ultimately chose to bank with CBR.
Laura McKay, nurse practitioner at Savannah Perinatology, said that her office takes a similar approach. The staff at Savannah Perinatology doesn't proactively inform patients of their cord blood options; however, when the subject comes up, they let the expecting mom know about several cord blood banks and encourage her to contact the companies and research on her own, much as Sawyer did.
Morris said Xytex is hoping to educate more parents and physicians about the value of cord blood banking. "We're working with both physician's offices and working directly with patients, helping educate them about cord blood banking, and hopefully physicians will let their patients know that this resource is available for them in Georgia" she said.
The actual process for banking cord blood is fairly simple. Patients receive kits from their doctors or their cord blood bank, which they bring with them to the hospital at the time of delivery. Hospital staff uses the kit to save the cord blood, which usually measures about half a cup. The family then calls their cord blood bank and a courier will retrieve the blood directly from the hospital. According to Zitlow, blood sent to CBR is processed and stored within 24 hours, awaiting the family if they should ever need it.
The cost of cord blood banking could still prove prohibitive for the average young family, even though banks like CBR and ViaCord offer payment plans. The initial fee for cord blood banking averages around $2,000, followed by about $125 per year for storage. However, weighed against the benefit of curing an incurable disease or healing a permanent brain injury, the cost could be worth it.
"[Parents] should educate themselves as much as they can about it, because their baby's birth is the only time where you can bank cord blood stem cells ... You can kind of consider it as a type of biological life insurance," Morris said.
Brandie Don Forsythe is convinced that the benefit outweighs the cost. She and her husband recently welcomed their second daughter, Isabelle, into their family. This time there was no question as to whether the baby's cord blood would be banked. "What happened to Alice could happen to anyone," said Brandie. "You buy car insurance, you buy life insurance, you buy home insurance. This is insuring the lives of your family. Two thousand dollars is nothing when you think of the health and lives of your family."
To find out more about cord blood banking and donating, visit:
• Parents Guide to Cord Blood Foundation (parentsguidecordblood.org)
• National Marrow Donor Program, marrow.org
• CBR, cordblood.com
• ViaCord, viacord.com
• Xytex, xytexcordblood.com
Hohna Hartley is a Savannah-based freelance writer.
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