Cord-blood research raises parents’ hopes

Stem-cell infusion revives 3-year-old son

Occupational therapist Heather Johnson works with Drake Haynes, 3, at ACCESS school in Little Rock on Friday. “If it wasn’t for the cord blood, I would be the mother of a wheelchair-bound child who was lifeless,” Drake’s mother, Nicole Haynes, says.

Occupational therapist Heather Johnson works with Drake Haynes, 3, at ACCESS school in Little Rock on Friday. “If it wasn’t for the cord blood, I would be the mother of a wheelchair-bound child who was lifeless,” Drake’s mother, Nicole Haynes, says.

Sunday, January 27, 2013

— On a chilly winter evening, Drake Haynes, 3, scampers around his grandparents’ living room, nimbly scaling furniture and making silly faces at his baby sister, Cambri.

A mop of unruly blond curls only adds to his impish appearance.

Drake loves Thomas the Tank Engine and will happily tell you so. He also loves talking to Siri on his mother’s iPhone.

He in no way resembles the vacant-eyed child who appears in earlier family photos.

At 20 months — Drake, who from birth suffered from cerebral palsy and frequent seizures — couldn’t crawl. His left arm and leg didn’t work, so the best he could manage was a halfhearted scoot.

Drake didn’t talk. He showed no response — not even a smile — to those who tried to interact with him.

“What was supposed to be the happiest time of my life was a nightmare,” his mother, Nicole Haynes, recalls when she describes the first two years of Drake’s life.

But looking at her son now, it’s difficult to believe that the little boy racing around the living room once faced a bleak future that seemed to promise only wheelchairs and silence.

‘WHEN WILL HE DIE?’

Drake was born on Sept. 28, 2009, his father’s birthday.

Nicole kissed him on the cheek, just before he was whisked away to the neonatal intensive-care unit about 9:45 p.m.

“Nicole, we’re going to take him,” one of the nurses told her. “He’s grunting. I’m sure he won’t be long.”

As a labor-and-delivery nurse, Nicole knew what that meant: Drake was having trouble breathing.

Midnight arrived, and still her baby remained in trouble.

Nicole slipped into a fretful doze.

At 3 a.m., someone arrived from the Cord Blood Registry to pick up the blood saved from Drake’s umbilical cord.

As she groggily signed the forms, Nicole had no idea just how important that cord blood would prove to be.

Meanwhile, in the NICU, Drake experienced repeated episodes of apnea — abnormal pauses in breathing — that lasted more than 20 seconds at a time. At one point, he had 12 episodes in just 30 minutes.

Doctors ran tests and started medications.

One of Nicole’s fellow nurses entered her hospital room with forms.

“We’re probably going to have to put him on a ventilator,” she told Nicole.

Finally, at 6:30 p.m. on the day after Drake’s birth, a doctor and nurse met with the Hayneses.

Nicole still remembers the doctor’s words: “I’m not concerned your son will die right now,” he began.

Nicole, seated in a wheelchair, leaned over and threw up.

Then she asked: “When will he die?”

The doctor tried again: “I’m trying to say he had a massive stroke to the right side of his brain. And maybe a small one on the left.”

The apnea episodes, he explained, were actually seizures.

“We went back to my room, and this super-awesome nurse gave me Valium,” Nicole says. Later, Nicole and her family spoke again to a doctor. “We don’t know if he will ever speak,” the physician said. “We don’t know if he’ll ever use the left side of his body. It’s a two-year waiting game.” Nicole spoke up: “I banked my cord blood.” “There’s nothing we can do with that,” the doctor replied.

NEW HOPE

The Hayneses, who live in Hensley, turned to Arkansas Children’s Hospital and met with a neurologist there.

“He was so much more optimistic,” Nicole says. “He told us, ‘[Drake] is not going to die. This isn’t a death sentence. It’s just a different way of life.’”

By 4 months old, Drake was receiving early-intervention services.

Still, as he grew and failed to hit any milestones, Nicole mourned what could have been.

In February 2011, she found out she was pregnant again. Drake was 16 months old and considered severely developmentally delayed.

One night, while watching a movie with her husband, Nicole scrolled through e-mail messages on her iPhone.

As usual, there was a newsletter from the Cord Blood Registry. Nicole had never bothered to read any of them, but this one caught her eye.

It was about cerebral palsy and how a Georgia hospital had been approved by the federal Food and Drug Administration to begin a study on infusing child patients with stem cells from their banked cord blood.

“That’s when it clicked in my mind,” Nicole says. “No doctor had ever used the term ‘cerebral palsy’ with us. Probably because you think of wheelchairs, and it’s just such a scary term.

“But that’s when I realized, ‘This is what my child has. There is something out there. And I banked his cord blood.’”

Nicole showed the newsletter to her husband.

“Baby, don’t get your hopes up,” he told her. “We’ve had such bad luck, and this will probably never happen for us.”

A week later, Nicole called the Cord Blood Registry to announce that she was pregnant again and wanted to bank this baby’s blood, too.

“We’ll send you the kit,” the woman said. And then — “How’s Drake?”

Nicole told her everything — about the traumatic birth, the stroke and the continuing seizures.

“That sounds exactly like a little girl we have enrolled in a study,” the woman said.

The little girl, Chloe Levine, also had cerebral palsy. She had experienced a stroke while in the womb and couldn’t use the right side of her body. But after she received an infusion of stem cells from her cord blood, Chloe quickly caught up with her peers.

Chloe, the woman said, had been part of a stem-cell infusion study at Duke University.

Georgia Health Sciences University in Augusta also had just started a similar study approved by the FDA, she told Nicole.

Nicole took down the information and wrote a long e-mail to Dr. James Carroll, the pediatric neurologist conducting the Georgia study.

Carroll examined Drake’s medical records and interviewed Nicole by phone. The doctor said Drake met all of the qualifications for the study and deemed him participant No. 5.

NEW RESEARCH

Cerebral palsy is a term used to describe neurological conditions that cause disabilities.

Those conditions are caused by damage to the cerebrum. Much of the time, the damage occurs during pregnancy or soon after birth.

It may stem from a stroke or improper development of the brain. In some cases, infection is to blame.

Symptoms include missed milestones, abnormal muscle tone, difficulty eating or sucking, favoring one side of the body over the other, floppy or stiff movements, spastic paralysis, hearing problems, poor coordination and seizures.

It’s believed by researchers that stem cells are able to stimulate the healing of damaged brain cells. They do so by regenerating new cells in the affected area.

Participants in Carroll’s research receive two infusions, says Kim Gray, the study coordinator.

On one occasion, the child receives a placebo. On the other, he receives stem cells.

Then, every three months, doctors assess the child to see whether there is any improvement.

In June 2011, the Hayneses took Drake to Augusta.

The procedure involved only an IV and a big syringe that injected either a placebo or stem cells into the IV.

It took five minutes.

The Hayneses remained at the hospital for five hours, then boarded a plane back to Little Rock.

Because of her medical background, Nicole had been able to understand what was written on the syringe. Drake had gotten stem cells.

In the months that followed, the toddler started talking. He said “mama” for the first time. He began to use his left arm and leg.

Still, the Hayneses took him back for the placebo. “We continued, even though we knew he got cord blood the first time. We wanted to finish the study,” Nicole says.

By January 2012, Drake was learning how to jump.

Watching his progress elated Nicole, who had spent the first 18 months of Drake’s life crying each time he was evaluated by therapists.

“They said he was a severely delayed child. ‘He can’t do this. He can’t do that.’”

Now, Drake was doing all of those things and more.

“If it wasn’t for the cord blood, I would be the mother of a wheelchair-bound child who was lifeless. He was this beautiful little boy with a vacant look. After the infusion, we described it as being like the blinds were opened on a window and he could finally see out.

“We thank God every day that we heard about this study at the right time.”

A NEW LIFE

The Georgia research allows for 40 participants.

“We’re at 16 now,” says Gray, the study coordinator.

Gray says she can’t elaborate on the results at this time, but adds: “I think I can safely say I’ve received a lot of positive feedback from the parents that have participated.”

Chloe, the little girl mentioned by the woman at the Cord Blood Registry, has been featured in several news stories. She received stem cells in 2008 at Duke University, which also is studying the effects of infusing children with stem cells from banked cord blood to treat cerebral palsy.

Within months of her infusion, the toddler could talk, walk and even run, her parents told news media. According to the Cord Blood Registry, Chloe has since started school at her grade level.

The Hayneses hope for a similar outcome.

At this point, Drake is considered only “mildly delayed,” Nicole says. And after the infusion, his seizures stopped, which means he no longer takes medication.

“He continues to progress. He’s using four- and fiveword sentences. He does everything a normal 3-year-old does.”

But the moment that still resonates most is when Drake’s little sister, Cambri, was learning to walk.

“Drake went to her, held her hand and helped her walk across the floor,” Nicole says. “He could have been watching her walk from a wheelchair.”

Front Section, Pages 1 on 01/27/2013