Back in the fall of 2006, Tami and Matt Byrd of Rochester Hills, Michigan, were busy growing their family and frantically adjusting to their schedule as parents of two rambunctious boys. It was an eventful but exciting time for the family, as Tami was five months pregnant with her third son.
But that December, their world was turned upside down. Four-year-old Blase had complained of having pain in his ankle for several days, so Tami, thinking the check-up was routine, took him to the doctor for blood work and an X-ray. Instead, doctors delivered devastating news: Blase had a rare blood disease called acute lymphoblastic leukemia, and he would need to start treatment right away.
The disease Blase had was so rare, in fact, that only 40 people worldwide had been diagnosed, and doctors warned the Byrds that the chance of survival was low—around 20 or 30 percent. “The pain of watching my 4-year-old being poked and prodded, administered chemo, undergoing spinal taps and bone marrow aspirates was almost more than I could bear,” Tami later wrote in a blog post.
But what seemed like an inevitable tragedy for a young family was suddenly given a breath of hope when Blase’s oncologist brought up the possibility of banking the cord blood from Tami’s then unborn child and using the cells in a transplant for Blase. It was a last-ditch effort but one that just might end up saving the 4-year-old’s life.
Defining cord blood
Cord blood, or the blood that remains in a baby’s umbilical cord after the cord has been cut, is rich in unique stem cells that can be used in a variety of medical treatments, including acute and chronic leukemia.
Cord blood has been used in the treatment of nearly 80 diseases, and currently more than 30,000 stem cell transplants have been performed, informs Morey Kraus, chief scientific officer at ViaCord, one of the country’s largest private cord blood banking services. “Even children from healthy families [with no medical history of disease] are diagnosed with diseases every day,” he says. “Studies have shown that using a close family member’s cord blood increases the chance of treatment success.”
Stem cells are the building blocks of the body that have the ability to create organs, blood, tissue and the immune system. The cells can be found in places like bone marrow and fat tissue, but the most flexible and easiest to collect stem cells come directly from the umbilical cord.
The reason? Cord blood cells are immunologically naïve, meaning they are less developed and more flexible than adult stem cells like bone marrow. With the infusion of cord blood stem cells, an individual’s own damaged cells can get help to repair and even re-grow.
According to the National Cord Blood Program, siblings have a 25 percent chance of being a perfect match for one another if one of them ever requires a stem cell transplant because each child shares one of its two HLA genes with each parent. Distant relatives, on the other hand, have a much smaller chance of being a match.
A perfect match
For the Byrds, it was cord blood banking from a sibling match that ended up saving Blase’s life. Through Viacord’s Sibling Connection program, which banks cord blood at no cost to expectant parents with a child in need of a transplant, the Byrds were able to bank the cord blood of their new baby, Brady, when he was born a few months later.
Doctors warned that the possibility of Brady’s cells being a good fit for Blase was slim. Fortunately, in this case, the cells turned out to be a perfect match. Blase had the University of Michigan Hospital’s first successful sibling cord blood transplant in June of 2007, though what happened after that can only be described as a miracle.
Six months after the transplant, Blase no longer needed treatment for leukemia. Soon after that, he was off all of his medications, and now five years later and 11 years old, he remains cancer-free.
After everything they went through, Tami says, the family has changed as well. They now try to live in the moment and volunteer whenever possible. “When your 4-year-old’s health is taken away almost overnight and you are left to sit in a dark room watching your child suffer, there are secrets of life spoken in that dark, awful place that make sunshine more glorious when you return,” she says.
Although the Byrds had a specific reason to bank their son’s cord blood, many families choose to bank privately as a form of insurance in case one of their kids needs it down the road, especially if there’s a family history of illness. But even those without any family history can still consider cord blood banking as an option.
“There are a few blood conditions that can be treated with cord blood that have a genetic component to them, but the majority of the conditions can pop up even if there is no family history,” says Aron Schuftan, MD, an OB/GYN in San Francisco. “For example, sickle cell anemia has a genetic component, but leukemia does not. Both mom and dad have to be carriers of the sickle cell trait for the child to be at risk for having the condition. No family history of blood cancers needs to be present for a blood cancer to pop up.”
Understanding the process
So how does it work? There are a number of national private banks available, and parents should begin researching their options long before baby is born, as the cost can vary slightly. The process of getting the blood to the storage facility, however is generally the same, wherever you choose to bank.
Once baby’s umbilical cord is clamped, the blood and placenta are drawn and transferred via needle into a sterile bag, which is then picked up by a courier and transported to a storage facility where it is processed and frozen. The procedure takes less than five minutes and is painless to both mother and baby.
Almost anyone can bank privately, with the exception of mothers who are HIV positive. But note, private banks do charge a fee, which can be a major expense for some families. On average, expect to pay between $1,000 and $3,000 for the initial collection fee, $150 for transport, a doctor’s fee which usually starts around $100, and $125 to $300 a year for storage.
“Cord blood banking has been viewed as expensive, but technology has advanced and the cost of processing cord blood has dropped significantly over the years,” says Kraus. “Today, many private family banks offer affordable payment plans. At ViaCord, we offer a variety of options to help make banking cord blood more affordable for families.”
A safety net
Toronto-based writer Hailey Eisen first heard about cord blood banking from a cousin’s email when she was pregnant with her first child. But at the time, she felt overwhelmed, as many pregnant women do, by the thought that her baby would ever be sick. Plus, the additional cost at the time was too much, so she pushed any thoughts about cord blood aside.
It wasn’t until she was pregnant again with her second daughter a few years later and saw information about cord blood banking at her doctor’s office that she began to research the possibility further.
“Admittedly, all of this was still a bit hard to swallow when I was so busy hoping and praying that both of my kids would always remain healthy,” she says. “But I was beginning to see the benefits of this type of medical ‘insurance’—plus the countless future possibilities of scientific discovery not even uncovered yet. It all added up to a strong justification for spending the money.”
After thinking it through, Eisen and her husband made the decision to bank their second daughter’s cord blood with CReATe, a Canadian cord blood and peristem stem cell bank. They were required to fill out a medical history questionnaire form that asked them about 50 questions, a standard procedure to ensure that nothing would contaminate the cells. Eisen also had to have blood work taken within seven days after giving birth to test for infectious diseases and other potential contaminates.
“The cord blood and peristem process involved no effort on my end,” she says. “Because my labor was so fast, we ended up forgetting our banking kit in the car but didn’t need to worry, as CReATe proactively provides select hospitals with emergency collection kits. The doctors handled the harvesting process, my husband packed up the kit and called the medical courier, and off it went.”
Eisen says the process was painless and did not in any way interfere with her birth plan. Thinking back, she says if she could do it over again and bank her older daughter’s cord blood, she would. “Many people are hesitant when they hear about the associated cost,” she says, “but like investing in insurance, it’s one of those things you pray you’ll never need to use but can sleep better at night knowing you have.”
If your family has no history of a genetic disease, parents might consider donating to a public bank as an alternative to banking privately. There is generally no fee for parents who wish to donate. Children affected by rare diseases who don’t have siblings or blood relatives who are a good match often rely on individuals’ donations to public banks.
Many hospitals collect cord blood for public donation, and the process is very similar to private storage. After completing forms about your family health history and your partner’s, you’ll identify what type of birth you expect to have (you can donate with both vaginal and caesarean births), sign consent forms stating your child’s cord blood can be used for any patient in need or for research purposes, and give a sample of your own blood to determine if it’s safe for public donation.
After you deliver, the collected blood will be given an identification number, stored temporarily, and then delivered to the public cord blood bank. Your family can feel good knowing that your gift may someday save a child’s life.
The potential for the use of cord blood in the future is bright. Currently in the U.S., there are more than 200 clinical trials with regenerative medicine, including research on autism, cerebal palsy, traumatic brain injury, pediatric strokes and juvenile diabetes, according to Schuftan, who says the full potential for the use of stem cells hasn’t been reached yet.
“Research is still being done in clinical and preclinical trials,” he says. “There is some emerging research being done in organ repair, including lung injury, heart disease and liver disease. The list continues to grow.”