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By Jessica Ryen Doyle, ,
Published October 27, 2015
Jamie Page and her husband, Ben, discussed the issue of banking their newborn’s cord blood so frequently before the birth that they finally decided if they didn’t do it, it might be the biggest regret they ever had.
“Medical advances change so quickly. Who knows when this child is 10, 20 years old if she’ll need it,” Page said. “It’s a great medical backup to have.”
It turns out the Pages, who live in Schaumburg, Ill., were absolutely right to save the cord blood.
Page had a normal pregnancy and her daughter, Harlow, was born seemingly healthy on March 19, 2008. But after two weeks, the Pages noticed she was crying a lot and seemed uncomfortable – and it just got worse.
“We were told it was probably just colic, to try different formulas, different ways of putting her to bed,” Page said. “At first I thought they were right. We must have tried six or seven different types of formula and we put gas drops in it, but she was pulling at her stomach . . . I just couldn’t put my finger on what it was.”
When Harlow was just 3 months old, her stomach became distended and she stopped having wet diapers. The Pages ended up in the emergency room, and tests revealed every parent’s worst nightmare: A grapefruit-sized mass was blocking Harlow’s kidney. Doctors quickly inserted a catheter and did a biopsy, which was sent out to several pathologists across the country.
“We were in the hospital for five or six days, letting her kidneys recover, and it was the craziest thing,” Jamie Page said. “In two days, we got four different pathologies – they all had different diagnoses. It resembled different cancers, but nothing they had ever seen before.”
There were no answers for the Pages – doctors didn’t know how to treat Harlow’s cancers, or what her prognosis was. A few pediatric oncologists in nearby Chicago decided it resembled a rare brain cancer, and it should be treated as such – so chemotherapy was the best protocol.
“We were so scared,” Page said. “My dad went through chemo for lung cancer, and it made him much more sick than helping him, we didn’t want to torture her. We just wanted her to be comfortable. At the time, doctors said she only had a few weeks to a few months to live.”
Ultimately, it was Harlow who decided for her parents. Her smile, despite how sick she was, made her parents think, ‘How can we not give this little girl a chance to fight?’
That’s when the Pages asked their doctors about a stem cell transplant. But the doctors were surprised – few families have their own supply of cord blood, they said, and it’s hard to find a match.
That’s when things started looking up for Harlow Page.
The Future of Medicine
After three rounds of chemotherapy, the doctors decided the tumor had shrunk enough for them to go in and remove it surgically, but when they cut Harlow’s abdomen open, the tumor was completely gone.
“We went in thinking she might’ve needed a hysterectomy,” Page said. “All she had left was scar tissue. They called in more surgeons to make sure they were looking in the right place. We were thrilled.”
Because the tumor was so aggressive, a stem cell transplant made sense – it was Harlow’s best option of ensuring that the tumor did not grow back. Still, she would need a double transplant.
The Pages met with the hospital's stem cell transplant team, which included Alexis Baby, a pediatric nurse practitioner.
“As of right now, there is a good prognosis,” Baby said about Harlow. “As each year passes, there is a big step toward relapse-free survival.”
So after five days of intense chemo – at higher rates than previously given – Harlow’s current cells were killed off. On the sixth day, she rested in an isolation room and on the seventh, they started the infusion. By this time, Harlow was 9 months old.
She spent 25 days in isolation to avoid any germs, but got to go home for two weeks before coming back to the hospital for her second round. Because she didn’t have enough of her own stem cells for that round, doctors had harvested her blood earlier and used that.
“As grueling as it was, she was getting her own stem cells,” Page said. “She didn’t need to be on anti-rejection pills like other kids. Some families had to worry about host vs. graft disease. We had enough concerns without worrying about her fighting her own body.”
Cord blood stem cells that are saved at birth are collected from the baby’s umbilical cord with a syringe – and the child does not feel a thing, unlike painful bone marrow extractions. Parents send the cells to a cord blood bank of their choice, where the cells can be stored indefinitely.
The price for banking cord blood varies depending on the company, but the procedure costs around $2,000 to $3,000 (this depends on whether or not you've saved the baby's cord blood tissue), plus an annual storage fee of about $125.
However, if you feel cord blood banking is too expensive an option for you, Baby urges parents to donate their newborn’s cord blood to a public bank, so it can be available for someone else who might need it.
“Otherwise, it's medical waste, and it’s just thrown away,” Baby said. “There is an option to donate it, but a lot of people don’t know about that, so it’s really unfortunate.”
Science has shown that cord blood stem cells are smarter than average cells: Once they are reinfused into the body, the cells migrate to the injured spot and immediately start the healing process.
Other advantages to using cord blood cells – besides not worrying about rejection – include the fact that the cells are younger and have not yet been exposed to any chemical or environmental factors, Baby said.
Doctors are constantly researching how cord blood can treat patients. Studies are being conducted on cord blood stem cells and their effects on brain injuries, Type I diabetes, neurology and cardiology – and that’s just the tipping point. Doctors think cord blood could be the future of medicine.
Harlow was released from the hospital in February 2009 – almost one year after she was born. Her parents had to literally teach her to swallow and eat again, because she had been nauseous for so long and had skipped solid foods. But by June 2009, she stopped taking all medications, and in September of that year, she was allowed to start attending day care.
Harlow has no recollection of being sick, and is a typical 3-year-old: She loves dancing, singing, gymnastics and watching her favorite movie, “101 Dalmatians.”
“I want to encourage other parents to save their child’s cord blood,” Page said. “I tell all our families and friends it’s the cheapest life insurance you’ll ever buy, and it’s an amazing opportunity for your child. To look at her, you’d never know, which is the best part of all.”