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'I would love to see her get out there and run someday,' Cathy Pell says of Abby, who has been treated with cord-blood stem cells. |
By AMANDA CRISSUP
When Cathy Pell was pregnant with her fifth child, she and her husband, Billy, decided to spend $1,700 preserving their baby's umbilical-cord blood.
The Pells aren't rich--Cathy is a stay-at-home mom, and Billy works in his parents' seafood restaurant.
But the Manassas couple wanted to know that if any of their children ever got sick, the blood--loaded with stem cells--would be available.
Cord blood can be an extraordinary tool for treating serious medical conditions. But it can also be an expensive and unusable form of health insurance.
For the Pells, the blood has become a source of hope.
Their baby, Abby, was born with severe brain damage because she went without oxygen for a time in the womb.
The stem cells have given the Pells a promising, if unproven, tool for restoring her neurological functioning. Abby has received two infusions of her own cord blood since her birth two years ago, with tantalizing but uncertain results.
"If it doesn't work, we've lost money. So what?" Cathy Pell said. "But if it can [improve] her life, then it's worth every cent."
Preserving cord blood for a family, though still not the norm, is an increasingly common event in American delivery rooms. Some notable physicians promote the idea. And it's gained popularity in part because newborn stem cells offer medical promise without the ethical baggage of embryonic stem cells.
The stem cells have the potential to treat a variety of conditions, from sickle cell anemia to brain injuries, and can boost immune systems during cancer treatment.
But a lot is unknown about just how much the cells can help. And finding a doctor with experience using the so-called "liquid gold" isn't always easy.
As the Pells have learned, the path from preserving cord blood to using it as treatment is lined with obstacles as well as hope.
Healing powersDr. Bob Sears, son of the venerable Dr. William Sears (author of "The Baby Book" and other best-selling parenting books), initially thought cord-blood banking was a gimmick.
But his wife, who had survived cancer as a teenager, read about it while pregnant with their third child. She was convinced they should bank their child's blood. After Sears did some research, he was convinced as well.
Sears, a pediatrician, has written about cord-blood preservation (see askdrsears.com), and he spoke about it for this story by phone from his home in California.
"There's so much research right now showing cord blood will treat very common childhood and adult diseases," Sears said.
The treatment possibilities are broad because stem cells are immature.
"[They] can change and grow into any kind of body tissue that they need to," Sears said.
Collecting and storing the blood isn't difficult, Sears said. After a baby's umbilical cord is cut, a doctor or midwife drains the blood with a syringe, then puts it into a vial for the parents--or a medical courier--to ship off to a cord-blood company's storage site.
The process eliminates a lot of the ethical, moral and religious debate associated with embryonic stem cells, Sears and Cathy Pell noted. No potential human lives are lost in cord-blood collection.
"Every baby has a nice full-size unit of stem cells just sitting in the umbilical cord ready to be collected," Sears said.
There are more than two dozen private cord-blood banks around the country. There are public banks as well, which let families donate without a fee, knowing the stem cells may be used for research or to help others.
Sears banked his third child's cord blood with Cord Blood Registry, a private firm in Arizona. The Pells, too, used CBR.
In each of the last two years, CBR has seen a double-digit increase in the number of families banking blood, according to Rita Kennen, the company's media relations manager.
She said more than 450,000 cord-blood samples are stored in banks around the country; in Virginia, roughly 4,000 families have stored stem cells with CBR.
"There has been a definite increase in new clients," she said in an e-mail.
One of them is Angie Perry, a Spotsylvania County mother due to give birth to her second child in October.
Perry said she paid $1,750 in her second trimester and will pay $125 annually in storage fees to preserve her baby's blood.
"I'm sure we waste that in a year going out to Starbucks," Perry said.
Perry said her older child, Edward, had a health scare several years ago that helped convince her to store her baby's blood.
"If something ever happened, I would have resources," Perry said. "That's something I didn't have with my son.
Judy Hall, coordinator of parent-child education services at Mary Washington Hospital, said she tells pregnant patients about the option.
"The more I learn about it, the more impressed I am," Hall said.
Yet there remains a level of discomfort associated with it. The cost is prohibitive to many. The medical science isn't convincing to everyone. And many families assume they'll never need it--or that conventional therapies could treat them if they got sick.
The Pells, though, think their story shows just how valuable the cord-blood investment can be.
"Only one in a thousand ever needs it," Cathy Pell said, speculating on the odds. "Well, you be that one."
'The gift of hope'For the Pells, it all started with an "Oprah" segment on cord-blood banking. Cathy Pell saw it and was sold.
She figured the family could put aside some of their fifth child's blood in case any of the four older children ever got sick. It never occurred to her that her baby would need it.
Born 10 days late, Abby's initial Apgar score--which measures a newborn's wellness--was zero. It later jumped to seven. But she'd had a bowel movement in utero. That's not terribly uncommon, but it can lead to serious problems, including oxygen deprivation, if the newborn inhales the tar-like substance.
"Most kids just get it in their mouth," Cathy Pell said. "Abby got it in her lungs."
It's not clear how long she was oxygen-deprived.
She spent two weeks at Children's Hospital in Washington, and a couple of months later had an MRI. She was diagnosed with moderate to severe brain damage in three of her four lobes. Doctors said she had microcephaly--a small head due to lack of oxygen.
"Her outcome, they said, would be abnormal," Cathy Pell said.
Pell said she told doctors at Children's Hospital about Abby's cord blood, and asked whether it could help. The answer, she said, was no.
But an e-mail from CBR gave the family new hope. It announced advancements being made using cord blood to repair neurological and spinal-cord damage.
The Pells started Googling, searching for a doctor with expertise in cord-blood transplantation. Cathy Pell said they inquired at several hospitals about having Abby's transplanted, but were told it wouldn't help.
"You have a lot of naysayers out there that need cold, hard facts," she said. "But the way I see it is if there's a small chance to help your child have a better quality of life, why not do it?"
Eventually, the family got the name of Dr. Joanne Kurtzberg, a professor of pediatrics at Duke University with a speciality in stem-cell transplantation.
After several exchanges, mostly by e-mail, Pell said, she asked Kurtzberg if she would transplant Abby's stem cells. She got the answer she'd hoped for.
At the doctor's request, CBR shipped Abby's stem cells to Duke, according to CBR. Kurtzberg wasn't available for comment for this story.
The Pells have now driven to Durham twice for transplants, the first when Abby, now 2, was about 6 months old.
The procedure is simple: Abby gets an infusion of her cord blood through an IV in her hand. But it's costly. Each transplant costs $10,000. The procedures are experimental, and so are not covered by insurance.
The family's friends at All Saints Catholic School in Manassas raised money to pay for Abby's first infusion; the Pells refinanced their house to pay for the second one. They expect she may get another infusion in two years.
"You've got to do whatever it takes for your kids," Billy Pell said.
Kurtzberg has consistently cautioned the family to expect little in the way of improvement from Abby, Cathy Pell said.
"Dr. Kurtzberg said you have to expect nothing will happen. This is not a cure," she said. "But what she gave us was the gift of hope. I can look at Abby and say, 'Baby girl, we did everything we could to help you.'"
And the Pells are certain the procedures have helped.
"She's definitely making progress," Billy Pell said.
Before the first infusion, Abby wouldn't lock eyes with anyone, and she couldn't focus her gaze.
"She was literally like Stevie Wonder, with her head left to right, left to right," Cathy Pell said.
But two weeks after the first transplant, Pell said, Abby looked straight at her during a bath and smiled.
"I was like, 'Oh my God, she sees me!'" she said. "I was just hysterical."
Abby is scheduled to have an MRI tomorrow. Cathy Pell said Kurtzberg has cautioned that even if the scan shows improvement, it doesn't mean the stem-cell transplants worked.
Whatever the scan shows, the Pells are grateful Abby has undergone the procedures.
"She wasn't getting better before," Cathy Pell said. "There's no 'proof,' but I have all the proof
Peggy Chenoweth, Abby's visual therapist, said she's unsure if Abby's progress can be attributed solely to the cord-blood transfusions. But she thinks it's likely a contributing factor, along with the more conventional therapy Abby's family has done.
"The combination has really gone a long way in making progress in that little girl's life," Chenoweth said.
Abby, who turned 2 yesterday, doesn't do a lot of the things most kids her age do. But she blows raspberries, makes eye contact and gets around with a walker.
"These seem like very small steps for a lot of people, [but] they're hurdles for Abby," her mother said. "I would love to see my daughter just run around and be fine, and I pray for that. But if not, it's OK. We've done everything."
For more information about cord-blood banking, see keepkids healthy.com/pregnancy/cord_ blood_banking.html.
To assess the quality of various cord-blood banks, see parentsguide cordblood.com.
To reach JANET MARSHALL:
Email: jmarshall@freelancestar.com
