Five

didn't hold.

Started at 36° - down to 28° (he said it wasn't 30 after all).

When we got down there, he was up to 44° and he could only get him down to 29°.

The removal of cast five

We aren't sure there are any good results from this one. In fact, his ribs look worse.

There's also something else we're a little concerned about, but we are going to talk to the doctor and see what he says before I go into too much here. We'll be back by Friday.

Take a minute

and read this, if you can. I found it while searching for information about the Salt Lake doctor you'll hear referenced in my next post. It gave me more information than I previously had about Jack's prognosis and condition - and I hope it will do the same for you.

Rare scoliosis procedure gives tot new hope

By Debra Melani
Denver Rocky Mountain News Staff Writer


When Olivia Noel Sorensen turns 3 on Christmas Eve, her mother will be
celebrating the life of her daughter, a happy and rambunctious little
girl whose fate looked grim a few months ago.

But thanks to her mother's determination, Olivia is likely to
celebrate many more birthdays, as are at least six other children
whose parents heard of the Denver residents' story.

Because Heather Hyatt refused to follow doctors' orders in treating
daughter Olivia's severe scoliosis, a procedure that's common in
France but not in the United States is now being offered at Shriners
Hospital in Salt Lake City. For families like Olivia's, it could be
the answer to a prayer.

"If it's successful, it brings up an alternative way of treating
infantile (up to 3 years) and juvenile (4 to 10 years) scoliosis,
because right now we really don't have a good way," said one of
Olivia's Denver spine surgeons, Dr. Courtney Brown.

Doctors had told Hyatt that the best thing to do for Olivia was to
keep her in a brace and "hope for the best."

But Hyatt didn't feel like just hoping.

"That's when I began researching," she said in a telephone interview
from Olivia's hospital room. After nearly three months in Utah,
Hyatt's goal is to bring her little girl home by Christmas.

Hyatt, a single mother, went on a quest to find a viable alternative
to what she believed — and doctors agreed — was a death sentence.

Olivia's infantile scoliosis, a condition rarer than its adolescent
cousin (11 years and older) but often much more virulent, had
contorted her spine to a 96-degree angle by the time she made it to
Shriners Hospital. Hyatt watched helplessly as a growing back hump
continued to disfigure her baby.

She found little information on the Internet but received a list of
about 10 doctors in Colorado who were associated with the National
Scoliosis Foundation. She began visiting each one and sending Olivia's
X-rays to prestigious medical institutions across the country. They
all stuck by her Denver doctors' suggestion.

Then Hyatt went to Dr. Cathleen Van Buskirk, a spine surgeon in
Boulder. That was her turning point.

"She was the only one who recommended a serial corrective plaster
cast," Hyatt said. Van Buskirk suggested a treatment done in France by
Dr. Jean Dubousset, a renowned expert in the field who Van Buskirk
said has probably seen more severe cases like Olivia's than has anyone
else in the world.

Scoliosis is much more common in Europe, possibly for genetic reasons,
said Dr. Jacques D'Astous, the Shriners Hospital doctor who treated
Olivia. He, like Van Buskirk, trained under Dubousset.

"Cases we see in this country are often people of European descent,"
he said. D'Astous said there is speculation that rates are falling in
the United States because of the campaign to place infants on their
backs to prevent sudden infant death syndrome. But many forms of
scoliosis, Olivia's included, have no known cause.

Hyatt took Van Buskirk's recommendation to her Denver doctors, who
refused to perform the treatment, some even calling it "barbaric," she
said. The procedure requires the children to be put in a turnbuckle
body cast and a "halo" bolted with eight screws to their heads.
Weights are then attached and slowly increased to gradually straighten
the spine.

Despite the doctors' negative reaction, Hyatt pressed on. "She was
already getting a huge rib hump," she said of Olivia. "It was mangling
her ribs."

To prevent the spine from killing Olivia by crushing her lungs or
heart, Hyatt said, drastic measures, such as fusing her spine, would
have been the ultimate course. "I refused to take that for an answer,"
she said, explaining that fusion would have shortened Olivia's life.
Her 2-year-old trunk would have stopped growing, leaving no room for
her organs.

"Those who are saying that this is barbaric in this day and age don't
understand what the basic problem is," Brown said.

Van Buskirk agrees. "After a curve becomes 90 degrees is when we start
seeing severe cardiopulmonary complications," she said. "I can't
predict how long she would have lived, but she would have died in her
childhood years."

Doctors want to control curvatures until children are at least 10 or
11, Brown said. Then the spine can be fused, "and you have a much
better chance at having a relatively normal child," he said.

Hyatt's persistence — combined with a little luck — paid off. She
tried for months to get a response from Dubousset. After resorting to
sending her pleas with Olivia's records to his home in France, he
answered.

"We were ready to move to France," Hyatt said, explaining that she had
friends in Europe who were going to help her find a home for medically
needy kids. Then she learned from D'Astous in Utah that Dubousset
would be visiting Shriners to receive a lifetime achievement award
before retiring.

Hyatt and Olivia were there waiting.

At Hyatt's urging, D'Astous persuaded Dubousset to evaluate Olivia.

"He came in and picked Olivia up by her head," Hyatt said. A
translator told Hyatt that Dubousset was worried Olivia was too young
to emotionally tolerate the procedure, but her condition was so severe
that something had to be done.

Speaking through the translator, Dubousset told Hyatt: "What your
daughter has is the hardest thing to treat in the orthopedic world.
That's why I took this on. Instead of crying, you need to fight this
disease every day for your daughter and never give up."

Dubousset agreed to train D'Astous and advise him over the phone from France.

Hyatt had learned from friends of a 3-year-old girl in Grand Junction
whose condition was almost as severe as Olivia's. She contacted the
mother, and that girl and Olivia soon were paving the way for other
children whose futures were equally precarious.

It wasn't easy.

"The first week was probably the roughest week of my life," Hyatt
said. "I was questioning myself, thinking: 'What am I doing? I hope I
don't kill my child."'

Because Olivia was too young to understand and would be too
frightened, she had to be put under general anesthesia, D'Astous said.
For older children, local anesthesia can be used to bolt in the halo
and apply the cast, which encases all but the arms and legs.

When Olivia awoke, she was confused and in severe pain.

"She was on morphine," Hyatt said. "The first week is a blur."

But she said she'll never forget her daughter's eyes full of fear.

"She'd say, 'What are you doing to me, Mommy?"'

With 11 pounds of weight hanging from her head, Olivia had to have a
supportive wheelchair or walker with her wherever she went.

But Shriners — a philanthropic, 22-hospital organization that treats
burn and orthopedic child patients for free — makes the families feel
at home, Hyatt said. Every day, there are activities for children,
including visits from traveling pets and sports stars.

After the first week, Olivia — and her Grand Junction cohort, Breann
Blackman — rebounded.

"I think they did awesome," D'Astous said. "I think the girls adapted
remarkably well."

Moreover, their spines responded. Olivia's 96-degree curve decreased
to a livable 45 degrees. "Basically, you are buying time for them,"
D'Astous said.

The girls have a daunting road ahead. They will be in and out of body
casts and braces for years. And they could face treatment again if
their spines revert to dangerous degrees.

In Olivia's case, that's likely to happen in one to three years. At
that point, it will be up to Hyatt to decide between another cast
procedure and seeking other experimental treatment.

The goal is to get her to at least age 10, when a spinal fusion could
be done with a better likelihood of giving her a relatively normal
life.

Not every child with severe scoliosis will get this procedure. Given
the treatment length and the intense medical supervision and
aggressive respiratory therapy needed, the cast procedure isn't likely
to be widely offered in the United States, Brown said.

"The reality is that nowhere in the country, except for a
Shriners-type environment, could this be done," he said.

Van Buskirk concurs: "The insurance companies wouldn't allow us to
keep children in the hospital for that length of time."

Other experimental procedures for children like Olivia are available,
but all require surgery. One such treatment Olivia might later undergo
involves implanting a titanium rod to help maintain the spine.

But D'Astous said French studies indicate that the results of the
procedure that Olivia underwent are far superior to any other
experimental treatment.

Once he sees how the girls do now that they've been placed in braces
to maintain the correction, D'Astous will probably encourage his
colleagues at Shriners hospitals to consider the treatment, he said.
He has already received six requests as a result of publicity
generated in Utah, and he plans to grant some of those requests, he
said.

"Right now things are looking very encouraging," he said.

Hyatt said it's gratifying to know she had a hand in making this
treatment available for other children, and she suspects she and
Olivia will have a special Christmas with a much-deserved rest.

"To know that there are going to be other kids now is the best feeling
in the world," she said. "Olivia went through a lot. And so did I."

Meeting Dr. D tomorrow

I've been pushing this out of my head time and time again, but it's really hit me this afternoon. We meet the new doctor (local) tomorrow at 9 AM to discuss bracing and, basically, Jack's future. This is a decision that will impact him for the rest of his life and I'm so nervous about making the wrong choice.

The head of the Infantile Scoliosis Outreach Program thinks Jack could still benefit from casting. The doctor doesn't. Hard to hear that and not know what to do and where to go, yk?

I have this nagging in the back of my mind that this has worked up until now and could continue to work. But, who am I to say?

As much as I want to chop this stupid cast off him and never look back, once we stop casting, that's it - no real chance of improvement and he'll have to live with this for as long as he's growing - until surgery/surgeries are an option. So, that weighs heavily on my mind. I want this to bring him down to a 0. I want a cure, damnit. We've done everything right - everything they said. We've driven miles and miles, dealt with no sleep, had countless NPO nights, and I'm just sick that it's the end of the road. Nine and a half months of this crap. I want to be finished - but I want him to be healed and whole and well.

Anyway - that's my state this afternoon. I'll update tomorrow as soon as I know what the new doctor thinks. He's doing an official training symposium here (like the one we attended when Jack was first casted) - and I should be thrilled that Jack's curve is not in vain - that we've done something good for our community by advocating for this and bringing it to St. Louis. But, really, I want to be selfish for Jack today and just say it's not fair.