Wall Street Journal Article/craniosynostosis, Article on Dr. doing unnessesary surgery Options

[PAENDOMOM]

Some Physicians Do Unnecessary Surgery On Heads of Infants
>
>The Wall Street Journal
>
>VOL. CXXXIV NO.38
>
>Friday, February 23, 1996
>
>by: Bob Ortega Staff Reporter
>
> _____
>
>They Remold Lopsided Skull when a Corrective Band May Be All that's
>Needed. At Fault: Sleeping Position
>TUCSON, Ariz. - Within a few months of her birth last spring, Katie
>Cipriano's head began to flatten in back and bulge in front.
>Concerned, her pediatrician referred her parents to a local
>neurosurgeon, Jack Dunn His conclusion: The sections of her skull had
>fused together too soon. She needed surgery - and quickly.Black and
>White Illustration: Katie Cipriano in her headband
>As Katie's mother listened in shock, Dr. Dunn said he would have to
saw
>off the top and back of the baby girl's skull and reshape it, in an
>operation that would take four hours and leave her, at best, with a
scar
>from one ear to the other. "He said he'd done so many of these
surgeries
>he could tell just by looking," says Kim Cipriano.
>Her child is part of what many doctors call a bizarre epidemic. Across
>America, parents in growing numbers are arriving at hospitals and
>doctors' offices carrying infants with misshapen skulls. Of 40
>pediatricians from 13 states interviewed, all but two say they have
seen
>a big rise in recent years in cases of infants with lopsided heads.
"In
>our practice, we've seen a 400% increase since 1992," says one doctor,
>Jeffrey Marsh, director of pediatric surgery at St. Louis Children's
>Hospital.
>Major Surgery
>Even more surprising is what many surgeons are doing to these babies.
>Diagnosing them with a rare condition called cranio-synostosis -
>premature fusion of the skull's bones - the doctors are recommending
the
>elaborate operation prescribed for Kate Cipriano. Thousands of
>operations for synostosis have been done in recent years. The large
>majority have been uneventful, but a few babies have died during
>surgery, others have been left permanently disabled, and in every case
>the financial and emotional cost has been tremendous.
>Now, the necessity of most of these surgeries is under question. A
>burgeoning number of pediatric neurosurgeons and cranio-facial plastic
>surgeons contend that there is indeed an epidemic - of misdiagnosis.
In
>Katie Cipriano's case, two leading specialists whom her parents
>consisted after getting the disturbing news told them she didn't
suffer
>from synostosis at an, and had no need for an operation.
>"There are a lot of kids getting that surgery that never get second
>opinions, so we'll never know how many may not have needed it," says
>Jeffrey Fearon, a craniofacial plastic surgeon in Dallas.
>The chief of Neurosurgery at Children's Hospital in Los Angeles, J.
>Gordon McComb, is among several surgeons who say they themselves have
>operated on infants who, they now believe, didn't need it. "It just
>drives me up the wall that we have this population that doesn't need
>surgery that is getting operated on," Dr. McComb says.
>Some Need It
>A few babies clearly do need skull surgery. In a baby's first 18
months,
>its brain more than doubles in size, pushing out the separate plate -
>like bones of the skull. Normally, when this growth spurt ends, the
>edges of those bones gradually begin to fuse. But in synostosis, some
of
>the plates fuse too soon, making the skull bulge somewhere else, such
as
>the forehead.
>Mild cases, where only one small area fuses, can be just cosmetically
>damaging. In severe cases, where several edges fuse prematurely at
once,
>surgery is imperative, to prevent the possibility of a dangerous
>pressure buildup inside the head.
>But various studies conclude that synostosis affects only one in 3,000
>babies; the land that flattens the back of the head is far rarer - one
>in 100,000. Yet back-of-the-head flattening is just what doctors are
>seeing in growing numbers.
>Critical Advice
>Now, specialists increasingly believe most such cases have nothing to
do
>with synostosis. Instead, they blame a widely publicized 1992
>recommendation that infants - in order to lower the risk of Sudden
>Infant Death Syndrome - sleep on their backs or sides and not on their
>stomachs.
>"Before that recommendation, 75% of the kids in this country slept on
>their stomachs," says Louis C. Argenta, director of the division of
>plastic and reconstructive surgery at Bowman Gray School of Medicine
in
>Winston-Salem, N.C. "Now it's down to zilch."
>He and others agree babies shouldn't sleep on their stomachs. But they
>say parents need to be told to vary babies' sleeping position, because
>lying the same way every night can mold the malleable head of an
infant,
>in the same way that the Incas once flattened babies' heads by
strapping
>boards to them. Many parents' habit of toting infants everywhere in
>car-seat carriers worsens the problem, doctors say, by prolonging the
>time the back of the head presses against a hard surface. Positional
>molding, as the result is called, often can be treated with a special
>reshaping headband or helmet or in some cases just by regularly
changing
>the position of the infant's head.
>"It's very common to misdiagnose the deformation of babies' heads",
says
>Stephen Beals, a cranio-facial plastic surgeon in Phoenix He says he
>himself has surgically opened the heads of babies only to find no
>evidence of synostosis.
>At the American Academy of Pediatrics, which issued the sleep-position
>recommendation, "we've been hearing these reports [about positional
>molding], too, and it's a concern," says John Kattwinkel, head of a
task
>force on how infants should sleep. He notes that "our recommendations
>are for infants being put to sleep; putting awake babies on their
>stomachs is a good idea." If heads flatten from too much sleeping on
the
>back, Dr. Kattwinkel says, "neurosurgical procedures are not what they
>need. The concern is not about how babies sleep but about how the
>medical community can overreact."
>The same problem has arisen in Britain, which likewise has seen a
surge
>in diagnoses and operations for synostosis since adopting a similar
>sleep recommendation two years ahead of the U.S. Doctors in Canada,
New
>Zealand and several Latin American countries are reporting the same
>phenomenon.
>The Denver Cases
>Indeed, long before the recent spate of cases nationwide - and before
>the academy's sleep recommendation -the Denver area saw an apparent
rash
>of overdiagnoses of synostosis. In the 1980s, surgeons at Children's
>Hospital in Denver opened up the heads of 978 infants diagnosed with
it.
>Many cases came through the hospital's program of urging pediatricians
>and school nurses to watch for signs of the problem.
>Kyle Powell's was a typical case. When he was three months old, in
1988,
>his pediatrician noticed that the back of his head was flattening and
>recommended a hospital visit. "I'd noticed it, but I hadn't been
>concerned because he always slept on his bark, and I thought that's
all
>it was," says Kyle's mother, Sherrie Bean.
>But at Children's Hospital, she says, a surgeon told her Kyle had a
rare
>and serious type of synostosis. "He said [Kyle] could be brain-damaged
>and/or die from pressure on the brain if he didn't operate as soon as
>possible," says Ms. Bean. The surgery was done.
>The spate of cases led the federal Centers for Disease Control to
>investigate. More red flags went up when surgeons from the hospital
gave
>a paper at a medical conference, only to have other neurosurgeons
>question their diagnoses. One skeptic, Joan Venes of the University of
>Michigan, examined two Denver children diagnosed with synostosis at
>Children's Hospital; "neither of them, I felt, required surgery," she
>says.
>In 1987, the CDC tentatively concluded that there was little evidence
of
>an epidemic of synostosis but that the Denver hospital's doctors were
>much likelier than others to diagnose it and recommend surgery. The
>hospital's diagnoses of the condition fell sharply, as did its
surgeries
>from 215 in 1986 to 31 last year.
>A review of Kyle Powell's X-rays by the head of pediatric neurosurgery
>at the University of Colorado medical school and of its residency
>program at Children's Hospital, Ken Winston, found "no evidence ... of
>synostosis." The review was done for his parents, who are suing the
>hospital. They say Kyle, now seven, has short-term memory problems,
>which they suspect stem from the surgery.
>Children's Hospital denies that operations it did were unnecessary or
>that the children didn't have synostosis. "We were doing what we
thought
>was right and prudent at that time, based on what we knew about
>cranio-synostosis," says Lua Blankenship, the hospital's president.
>Lots More Cases
>Although the Denver controversy rippled through professional circles,
it
>didn't ring warning bells elsewhere in the healthcare community. In
the
>years since the recommendation on sleep position, as medical centers
>across the country have seen more and more infants with misshapen
heads,
>many doctors have readily diagnosed synostosis. In hundreds of cases,
>they did skull surgery; many continue to do so.
>It nearly happened with Dion Flannery. Two summers ago she gave birth
to
>twins, Michael and Kyle. When they were three months old, the backs of
>their heads started to flatten. Ms. Flannery, of Boca Raton, Fla.,
took
>them to Miami's Children's Hospital. After CT scans, a radiologist and
a
>neurosurgeon told her both boys needed operations immediately. "The
>description of the surgery freaked me out," she says.
>Determined to get a second opinion, Ms. Flannery flew the boys to
Dallas
>to consult with Kenneth Salyer, a cranio-facial plastic surgeon. He
said
>neither boy had synostosis, and both could be treated more simply.
>"Bottom line," she says: "In June, Michael came out of his helmet. In
>August, Kyle came out of his. Now they have beautifully shaped heads,
>and neither one needed surgery."
>At Miami Children's Hospital, Deirdre Marshall, a surgeon but not the
>one who saw the Flannery boys, says, "Perhaps there was a mistake.
It's
>difficult to distinguish even with CT scans between true synostosis
and
>positional deformations."
>Not Easy to Tell
>The doctors who read X-rays and CT scans do often find them hard to
>interpret, surgeons say. Dr. Argenta in Winston-Salem says that of the
>last 51 infants referred to him with misshapen heads, "our
radiologists
>said they saw abnormalities consistent with varying degrees of
>synostosis in 38. But only two of the children wound up having
>cranio-synostosis." The rest were corrected with helmets.Part of the
>reason for the difficulty in diagnosis is somewhat paradoxical:
>According to surgeon Joseph Gross of Children's Hospital in Seattle,
>some of the standard medical literature on what to look for is based
on
>cases that now aren't believed to have been synostosis at all.
>Another problem: Managed-care systems typically don't employ pediatric
>neurosurgeons and often are reluctant to refer patients to outside
>specialists. "There are [only] about 80 full-time, card-carrying
>pediatric neurosurgeons in the country, and maybe 300 others who do
>pediatric neurosurgery as part of a broader practice" and clearly
>understand the difference between positional molding and synostosis,
>says Harold I. Rekate, a pediatric neurosurgeon in Phoenix. "That
leaves
>about 3,700 neurosurgeons in the U.S. not actively pursuing
pediatrics,
>but who work in centers where they're occasionally asked to do
pediatric
>neurosurgery. They're the ones we're now anxious to reach" to warn
>against false diagnoses of synostosis.Katie's StoryUntil the word gets
>out, some parents must fend for themselves, as did Mrs. Cipriano.
After
>surgery was ordered on her baby last September, Mrs. Cipriano, with
>Katie in her arms, stumbled in tears out of his office. She and her
>husband decided that if their child needed surgery, they would seek
out
>the best surgeons in the country.Their search led to the cranio-facial
>center at Medical City Dallas Hospital. Over the phone, they scheduled
>surgery. Then they had Katie baptized, hired a photographer to shoot a
>family portrait and flew to Texas for the operation.
>The next morning, Dr. Fearon of the medical center examined Katie and
>the CT scan brought along from Arizona. Then, recalls Mrs. Cipriano,
he
>said something startling: "I will not operate on her." The bones in
>Katie's head hadn't fused, he said; she didn't have synostosis.
>The Ciprianos, though elated, were also confused. "We wanted to
believe
>him, but it seemed almost too good to be true," says Mrs. Cipriano.
They
>sought a third opinion, from Dr. Rekate in Phoenix.Dr. Rekate, too,
said
>Katie didn't have synostosis. He said she had positional molding, and
>recommended that she wear a $2,000 headband designed to restore the
>normal shape of her head. She began wearing one, 23 hours a day. "It
>took seven days in the band and we, with our untrained eyes, could see
a
>dramatic change," says Mrs. Cipriano. At 10 months of age, Katie now
is
>so normal-looking that she may come out of the band this month, Dr.
>Rekate says.Dr. Dunn, the Tucson doctor who said she needed surgery,
>makes no apologies. While declining to discuss this particular case,
he
>says he doesn't operate on most infants he sees with misshapen heads.
>Still, he says he does do 25 to 30 "cranial vault remodels" - the
>cutting and reshaping of infant skulls - every year. Dr. Dunn, who
notes
>the difficulty of interpreting X-rays and CT scans, says that even if
>the deformity turns out to be due to something other than synostosis,
>surgery sometimes produces a result that is cosmetically superior to
>headbands.Some physicians decry that notion, among them Ian Munro, a
>cranio-facial surgeon at Medical City Dallas Hospital. He doesn't know
>Dr. Dunn, but speaking generally, Dr. Munro says: "This is an ego
>business - surgeons see something wrong, they want to fix it."
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AFTER READING THIS ARTICLE...IT IS IMPARITIVE TO DO YOUR HOMEWORK, MAKE SURE YOU GET A CAT SCAN, NOT JUST THE WORD OF SOMEONE SAYING, "YEP I CAN TELL THEY NEED SURGERY JUST BY LOOKING AT THEM", CHECK OUT THE DOCTORS CREDENTIALS, TALK TO OTHER FAMILIES WHOS CHILD HAD THE SURGERY BY THE DOCTOR, AND ASK MANY MANY QUESTIONS. AND THE BEST ADVICE GET A SECOND OPINION!!