Dallas Hextell was already a miracle to parents Cynthia and Derak, after
they spent three years trying to get pregnant.
But now he is looking like a medical miracle to the rest of the world.
The 2-year-old son of the Sacramento, Calif., couple was diagnosed with
cerebral palsy, but is now showing fewer signs of the disorder and marked
improvement after an infusion of his own stem cells made possible by the
preservation of his own cord blood shortly before birth.
Derak Hextell now believes his son will be cured of the incurable malady.
[Dallas doctors] said by the age of 7, there may be no signs of cerebral
palsy at all, Hextell told TODAY co-host Meredith Vieira while holding a
curious Dallas on his lap. So hes on his way, as far as were concerned.
For Cynthia Hextell, the changes in Dallas just five days after the
intravenous infusion of his cord blood cells are not coincidental.
[Hes changed] almost in every way you can imagine, just from five days
afterwards saying mama and waving, she said. We just feel like right now
he really connects with you.
It just seemed like a fog was over him before, like he just really wasnt
there. There was kind of, like a glaze in his eyes. Now, as you can see,
you cant get anything past him.
A difficult start
The joy of Dallas birth in 2006 was met with gradual heartbreak as he was
unable to feed from his mother. He was constantly crying and rarely opened
his eyes. At five months, Dallas had trouble balancing himself and his
head was often cocked to one side.
The Hextells switched pediatricians when Dallas was eight months old and
was diagnosed with cerebral palsy a group of nonprogressive disorders that
affect a persons ability to move and to maintain balance and posture.
Various studies show that the damage to the motor-control centers of the
young, developing brain that causes CP occurs during pregnancy, although
there are smaller percentages of the disorder occurring during childbirth
and after birth through the age of 3.
I think its important to remind people that cerebral palsy has to do with
the motor part of the brain and usually kids don’t deteriorate, said Dr.
Nancy Snyderman, NBC News chief medical editor. But they have significant
motor problems, which explains why he wasn’t a good sucker when he was
breast-feeding as a baby and all of this colicky stuff that sort of
confused the diagnosis.
There is no known cure for cerebral palsy, and the treatments to help
manage its debilitating effects make it the second-most expensive
developmental disability to manage over a persons lifetime, behind mental
disabilities.
At 18 months, Dallas had very limited motor skills. He could not crawl,
clap or sit up and he communicated only through screaming brought on
mostly by pain and frustration.
Life-changing decision
During her pregnancy, Cynthia Hextell had done thorough Web research on
health issues relating to childbirth and came across a pop-up ad for Cord
Blood Registry, the worlds largest family cord blood stem cell bank. The
San Bruno, Calf.-based company has preserved cord blood stem cells for
more than 200,000 newborns throughout the world.
Hextell said the cost of saving Dallas cord blood about $2,000 and not
covered by insurance was off-putting. But she ultimately registered for
CBR, thinking she would rather put up the money and not use it rather than
have saved it and regretted it later.
(Cord Blood Registry spokesman David Zitlow said the procedure costs
$2,000 for processing and $120 per year for storage.)
We had a perfectly healthy pregnancy, but it did take us three years to
get pregnant, Cynthia Hextell told Vieira. It was a good chance he was
going to be our only child, so that was one thing that if we were going to
do it, this was our only chance.
Heart disease ran in [Derak Hextells] family. I was adopted, so I knew if
we ever needed something, Dallas and I were the only ones [who could
provide a genetic match]. So those were things [we considered], but
nothing like I thought something was going to be wrong with my child.
Literally, it took us until about two weeks before our due date to make
the final decision because it is expensive.
After Dallas was diagnosed, the Hextells traveled to Duke University,
where doctors were using cord blood as part of a clinical trial to treat a
small number of children who had cerebral palsy or brain damage. Mrs.
Hextell called some of the parents of the children and all of them
reported tangible improvement in their children following the transplant
of stem cells, evidenced in better speech and motor skills.
So the Hextells agreed to infuse Dallas own stem cells back into his
bloodstream last July, a procedure that took less than an hour.
Within five days, a different child emerged laughing, clapping, waving and
reacting.
We think [the transfusion] has a real big part to do with it because it
was such a drastic change within five days of the procedure taking place,
Derak Hextell said. It had to be because he wasn’t reaching the milestones
that hes reaching now. He was falling further and further behind.
Before he went to Duke, we were trying to teach him to use a walker,
Cynthia Hextell said. Now he walks with no assistance at all.
Saving the cells
Although Dallas case was not part of a controlled case study, Snyderman
said it should not be overlooked in the progressing studies of stem cell
treatments.
I think the thing that medicine has not done very well is we havent made a
big enough deal about anecdotes, she said. This is not a controlled case
study. Its not a randomized clinical trial. But it is a child with a
diagnosis who got a transfusion of stem cells and not only stopped the
deterioration of his problems, [but] he’s doing better.
So I take it very seriously. And I think its an extraordinary reminder
that cord blood, that stuff that is thrown away with the placenta in the
emergency room as sort of medical waste, can have extraordinary
applications. Were all offered it in the delivery room.
Snyderman didnt have to convince one person about the promise of those
stem cells.
Said Cynthia Hextell: Theyre like gold.