It started as a small ‘hiccup-like’ movement.
Rebecca Coates had given birth to her daughter Bailey only hours earlier when she noticed something was not quite right with her infant.
“She was moving really strangely, even under the swaddle, so I called the nurse just to make sure she was breathing okay,” Coates told FoxNews.com.
Bailey was given the ‘all clear’ by the hospital’s staff – but the ‘hiccup-like’ movements didn’t stop. So after Bailey was discharged, Coates rushed her to a pediatric neurology consultation.
“They scheduled her for an MRI, and that’s when we found out she had had a stroke” Coates said.
Doctors believe Bailey suffered a stroke in utero after a piece of placenta detached and traveled through her umbilical cord into her brain. And those strange movements Coates had noticed had actually been seizures.
Initial visits to neurologists yielded scary predictions for the Coates family. Bailey’s stroke occurred in the left side of her brain, and as a result, her ability to move her right arm and part of her right leg had been compromised. One doctor predicted that 25 percent of Bailey’s brain had been affected and that she may never walk or talk without intensive therapy.
“I remember lying in bed and thinking, ‘She only rubs her eyes with her non-affected side,’ and I remember staying up at night and watching her do that and being so scared,” Coates said.
Cord blood banking
When Bailey was born, Coates and her husband Bob had decided to bank Bailey’s cord blood through Stemcyte, a private cord blood bank. Found in a baby’s umbilical cord, cord blood contains hematopoietic progenitor cells, a type of stem cell that has been used to treat leukemia and lymphoma. The Coates family had also heard that cord blood was being used in research for Alzheimer’s disease – a condition that ran in their family – and they figured the banked blood may be useful someday.
“To be honest, it’s cheaper than my television, so of course I’m going to invest that way in my child’s future,” Coates said. “I never in a million years thought we were actually going to use it.”
Though Bailey was immediately enrolled in physical therapy programs, Coates began researching other options as well – keeping in mind the cord blood she had banked upon Bailey’s birth. Eventually, she wandered across a clinical trial run by Dr. Joanne Kurtzberg, the director of the pediatric blood and marrow transplant program at Duke University.
For the past 25 years, Kurtzberg’s pediatric transplant program has pioneered work using umbilical cord blood as a way to treat diseases and injuries affecting the brain. After previous research had indicated success treating children with genetic brain diseases using donor cord blood, Kurtzberg’s new trial was exploring whether or not children with certain brain-damaging conditions could benefit from being treated with infusions of their own cord blood.
Though Bailey was not eligible for the already-in-progress trial, Coates called Duke anyway, and the program agreed to allow Bailey to receive the treatments as part of their compassionate care program.
“When we first heard about her history, which was that she had seizures as a neonate and showed a scan that showed stroke, we felt she was clinically a good candidate. And on top of that, they had banked her cord blood with a private bank,” Kurtzberg told FoxNews.com.
Soon after being chosen for the program, Bailey began receiving infusions of her own cord blood at Duke. The process involves a 15-minute intravenous infusion of cord blood cells, followed by two hours of IV fluids and a three-day stay in Durham to monitor for allergic reactions. Furthermore, the procedure is considered very safe – particularly when a child’s own cord blood is used.
Kurtbzberg said they believe the cord blood cells help initiate signaling that decreases inflammation around the area of the brain affected by stroke. This ultimately attracts neural stem cells already in the brain to start repairing the injured areas.
“They also give out signals that promote angiogenesis – blood vessel formation – and when that happens, it promotes repair of the injury and promotes, in the case of stroke, revascularization – or new blood flow to the areas otherwise damaged,” Kurtzberg said. “Both those things end up causing new connections between neurons, the nerve cells, and those new circuits are what’s responsible for restoration of function that would otherwise be damaged.”
Now 14-months-old, Bailey has had three transfusions so far, and Coates said she appears to be responding well to treatments. She now has use of both sides of her body, and she is learning to walk and talk as well – hitting all the milestones expected of normal, healthy children her age.
“She is completely age appropriate. The only thing I’ve noticed is she has some hand preference, but that could be just because she’s going to be left-handed…,” Coates said. “Two-handed activities she does with no problem; she can hold a cup; she can point with her finger. Typically a child with cerebral palsy, which she was at risk for, would have a fisted hand and wouldn’t be able to open and close or grasp objects and point.”
Kurtzberg said Bailey’s progress has been encouraging – though they can’t definitively know whether it was the cord blood infusions or other factors that have contributed to Bailey’s progress.
“Bailey has done well. She is developing with more function than you might have predicted based on what her brain scans showed,” Kurtzberg said. “Her parents have done a really great job with her in terms of not only getting cord blood infusions but also pursing every sort of early intervention and therapy possible.”
Dr. Charles Law, the medical director at United Cerebral Palsy of Greater Birmingham, saw Bailey both before and after she began cord blood infusions and said the degree of function she has is remarkable – considering the amount of brain damage she incurred as a result of her stroke.
“I think that’s the best part of the story, when you look at her MRI you expect a dense hemi-paresis, I expect her to have very limited use of her right side,” Lawson said. “But the opposite is true, if I wasn’t looking for it I probably wouldn’t even notice anything is wrong with her. In my mind, that’s the great part of the story. Her MRI does not fit her clinical picture.”
Though more research needs to be done before Bailey’s progress can be directly attributed to her cord blood infusions, the Coates family, Kurtzberg and Law all hope Bailey’s story will help spread the word about the potential benefits associated with banking a child’s cord blood.
“If we know this works, we need to enable early diagnoses and collection of cord blood, not because a family chooses to do it and can afford it, (but) because it’s the right thing to do medically and we have to figure how to deal with the cost of that,” Kurzberg said.
For more information about pediatric stroke, visit chasa.org.
For more information about cord blood banking, visit the http://www.fda.gov/biologicsbloodvaccines/resourcesforyou/consumers/ucm236044.htm
To follow Bailey's progress, visit her Facebook page.