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- LOS ANGELES - While the potentially life-saving benefits
of the "Back to Sleep" campaign -- launched nationally in 1994
to reduce the risk of Sudden Infant Death Syndrome (SIDS) -- are indisputable,
the admonition to place babies on their backs during sleep has resulted
in an epidemic of plagiocephaly, or "misshapen head," in infants,
according to John M. Graham, M.D., Sc.D., director of Cedars-Sinai Medical
Center's Craniofacial Clinic.
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- Over the last five years, the incidence of nonsynostotic
positional plagiocephaly has jumped fivefold: from an estimated 1 in 300
live births to 1 in 60 births today. Though easily treatable, plagiocephaly
and accompanying torticollis, a shortened or tightened muscle on one side
of the neck, may go unrecognized by parents and health care practitioners
alike.
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- Misshapen heads are often secondary to the muscular torticollis,
which causes the baby to tilt his or her head toward the tight side and
turn away, resulting in a preferred resting position. As a consequence,
the infant's normal, rapid rate of head growth coupled with a consistent
resting position can lead to significant asymmetry of the head shape.
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- "When infants sleep in one position, there is consistent
pressure on their soft and forming skull, which can result in deformation
of the head," explained Dr. Graham, who estimates the clinic handles
250 to 300 visits a year for this condition. "Unfortunately, many
care providers are unaware of the symptoms and inappropriately reassure
parents that the child will grow out of it. Left untreated, torticollis
and plagiocephaly can result in permanent distortion of the head as well
as persistent facial asymmetry."
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- The result is often needless worry, he added. "It's
really a very simple problem that needs to be more clearly recognized by
the medical community and public." Muscular torticollis is usually
caused by the limited room in the uterus for the baby during late gestation,
and it is even more common with multiple gestation (twins or triplets).
Torticollis can be difficult to detect at birth or in young infancy because
the neck is relatively short. One noticeable symptom is a persistent head
turn, and parents frequently report a preferred resting position with sleep.
After age six months, the neck begins to lengthen, and tilting of the head
toward the tight side may become more evident, suggesting the need for
neck physical therapy.
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- Culver City residents George and Kelly Athanasas know
first-hand the concern and confusion this condition can cause. For several
months the anxious new parents observed a number of troubling symptoms
in baby Niko. A lump on the side of his neck was initially diagnosed as
a swollen gland, though there was no response to treatment. Niko wasn't
turning his head either, and the right back side grew increasingly prominent
while the back left became flattened. Kelly also recognized a noticeable
tilt to Niko's bottom gum line, and that the baby's ears seemed out of
alignment.
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- These are some of the telltale signs of torticollis and
plagiocephaly, according to Dr. Graham, and parents are often the first
to recognize them. The condition, which does not affect normal brain growth
and function, may include the following physical characteristics:
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- * the back of the head is flattened on the same side
that the forehead is more prominent * the ear on the side of the occipital
flattening (at the back of head) can be larger and advanced forward, compared
to the other ear * the jaw can be asymmetric, with an upward slant on the
same side as the shortened muscle * facial asymmetry, with one cheek appearing
more full and one side of the forehead appearing more prominent than on
the other side
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- After visiting two pediatricians, the increasingly concerned
Athanasases were referred to Cedars-Sinai's Craniofacial Clinic.
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- "When I called the clinic, I described Niko's symptoms
to the nurse, and I immediately felt reassured that the staff could help
us," said Kelly, who brought the then seven-month-old baby in for
a comprehensive evaluation by Dr. Graham. Niko was subsequently diagnosed
with torticollis-plagiocephaly deformation sequence and began a prescribed
regimen of neck massage and stretching. He was also fitted with a custom-made
"helmet" -- worn virtually around the clock for four months --
to help reform his head and reposition his features.
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- Treatment of the condition includes neck physical therapy
to correct the muscular torticollis along with repositioning techniques
and/or helmet therapy to correct the head shape. Complete resolution of
the shortened muscle takes four to six months of regular neck-stretching
and head turning exercises, which are performed by the parents. The sleeping
position must also be altered to train the baby not to lie on the flattened
part of the head, allowing this area to fill in properly. This can be accomplished
by using an infant positioning device and placing favorite toys and stimulating
objects on the baby's non-preferred side to encourage him or her to remain
in the prescribed position.
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- If significant head asymmetry is present at six months,
helmet therapy is necessary to correct the head shape.
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- "The correction of head asymmetry with helmet therapy
is based on head growth -- the normal rate of growth slows at around one
year of age, so we have a window of opportunity when the baby is between
six months and one year old," Dr. Graham stated.
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- In Niko's case, his plagiocephaly was already quite pronounced
so helmet therapy began simultaneously with the neck stretching exercises
and repositioning techniques. The corrective helmet is designed to "remold"
the head to a natural, oval shape, and therapy usually continues for four
months. Babies quickly adapt to wearing the helmet, which is ventilated
with holes to allow its use in Southern California's warm climate.
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- "Within the first few weeks of wearing the helmet,
I called the doctor's office and said, 'Niko's cured, he's cured!,' "
Kelly remembered. "They told me it would take longer, but I was amazed
at the progress."
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- Every few weeks, Niko returned to the clinic for evaluation
or to the orthotics specialist for adjustments to his helmet. Despite Kelly's
concern that his features might always be "a little crooked,"
she watched with excitement as his ears and gums shifted into proper alignment,
and Niko's head began to round normally. "He's great now, and his
head is gorgeous," she said with relief. "Every parent wants
their baby to be perfect, and I was so afraid he'd be deformed."
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- Tony and Susan Avallon, also of Culver City, faced similar
concerns when twins Perris and Quinn displayed signs of the condition.
At four months, both babies had noticeable flattening behind the right
ear, while the left back sides of their heads appeared more prominent.
Susan also noted that their right ears were larger.
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- "It was scary, because the problem was clearly getting
worse, and no one could explain why," said Susan.
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- A pediatrician told the anxious parents that it was "nothing
to worry about," and a neurosurgeon wanted to fit the twins with $7,000
"headbands." Neither mentioned torticollis and plagiocephaly,
which Susan first heard about at her Twins Club meeting. That chance conversation
led to a referral to Dr. Graham, who told them that torticollis is more
frequent in twins and triplets because they have even less room in the
uterus in late gestation.
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- "He was really so great, so thorough," she
recalled. "He went over everything and spent hours with us."
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- The twins, then five months old, embarked on neck physical
therapy and repositioning techniques as their first course of treatment.
While Quinn responded well, it was determined that Perris required the
helmet therapy to correct her degree of plagiocephaly. At six months, she
was fitted with a helmet, which she wore day and night. Her mother explained
to curious onlookers that the headwear was like "braces on your teeth,"
but designed to round the head into shape. Susan was impressed with the
dramatic -- and speedy -- improvement she witnessed in Perris' head shape.
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- "I'd never heard of this condition; my pediatrician
had never heard of it," Susan added. "This is a dramatic example
of the importance of a second opinion. I'm really happy now, and I'm so
glad I found Dr. Graham." Director of Clinical Genetics and Dysmorphology
at Cedars-Sinai Medical Center, Dr. Graham is also a professor of pediatrics
at the University of California-Los Angeles School of Medicine. He is a
graduate of Johns Hopkins University and The Medical University of South
Carolina, and also earned a Doctor of Science degree in Communicative Disorders
from Johns Hopkins School of Hygiene and Public Health.
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- Dr. Graham, who has authored more than 200 publications
on medical genetics and birth defects, is president of the Society of Craniofacial
Genetics, and a member of the American Cleft Palate/Craniofacial Association,
American Society of Human Genetics, Society for Pediatric Research and
American Pediatric Society. In addition to his work with plagiocephaly
and torticollis, he runs a diagnostic and treatment center for children
with developmental delays or birth defects at Cedars-Sinai Medical Center.
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