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Parents and the internet help change the traditional
view of how best to treat babies born with clubfoot
Martin Egbert and his wife, Allyson, didn't set out to do
anything more than figure out what was best for their
newborn son, Joshua.
They ended up partnering with other like-minded parents
to help change the orthopaedic establishment's view of how
best to treat babies born with clubfoot.
Joshua Egbert was born in March 1999 with congenital
clubfoot. Clubfoot is one of the most common problems to
occur with the birth of a child, and a condition that most
orthopaedic specialists have historically treated with
surgery.
The Egberts didn't know it at the time, but an
alternative nonsurgical method of treating the deformity had
been developed five decades earlier by Ignacio Ponseti,
M.D., a University of Iowa Children's Hospital orthopaedic specialist.
Even though it was relatively simple and 1,000 babies had
been treated successfully with it, only a handful of the
world's orthopaedic surgeons (among them Frederick Dietz,
M.D.; Stuart Weinstein, M.D.; and Jose Morcuende, M.D, from
University of Iowa Health Care, and a few more doctors
trained at UI used the Ponseti Method.
The Ponseti Method involves manual manipulation and
straightening of the foot and the application of
toe-to-groin plaster casts.
Egbert, who lives in Henderson, Nevada, said, "Most
doctors we talked with acknowledged that Dr. Ponseti was
well-known and highly respected in the field, yet they
recommended against his non-surgical approach. What pushed
me over the edge was a conversation I had with Dr. John
Herzenberg, a leading orthopaedic specialist and clubfoot
expert at the University of Maryland Medical School. Dr.
Herzenberg was a convert to the Ponseti Method. He had come
to realize that Dr. Ponseti's documented long-term outcomes
from non-surgical treatment were superior to surgical
outcomes, which have never been fully documented, even
though surgery has been the treatment choice for about 50
years. Dr. Herzenberg encouraged us to try it, which we
did."
The results for the Egberts' son appear to be excellent.
At age three, his corrected feet appear normal and are very
flexible. To prevent relapses, at night he wears shoes
attached in outward rotation to a nine-inch long bar (FAB).
The FAB is worn until approximately age four, at which time
the treatment process will be complete.
Egbert said his own experiences with Joshua made him
aware that other parents of children with clubfoot didn't
know they had a non-surgical option, either.
"We were concerned that any parent should have to face
such an important decision as clubfoot surgery without
knowing about the alternative of a proven non-surgical
method," he said.
In partnership with more than a dozen other parents whose
children had benefitted from the Ponseti Method, the Egberts
devoted themselves to helping Ponseti change the culture of
orthopaedics. They used the internet clubfoot message boards
that had been created by prior clubfoot parents as a way to
educate thousands of parents about the Ponseti Method and
its advantages over traditional surgery.
Coinciding with those efforts was a media campaign
involving some of the parents and supported by UI Health
Care. This campaign resulted in dozens of stories being
about the Ponseti Method being published and broadcast by
newspapers and television stations across the country.
The impact of the educational campaign was dramatic. More
parents became aware of the nonsurgical method and asked
their physicians about it. A major breakthrough occurred
when Ponseti was invited to make high-profile presentations
at two national orthopaedic conventions, appearances that
helped convince many within the profession that past
surgical approaches had produced less satisfactory long-term
results.
Ponseti is delighted that more and more orthopaedic
surgeons worldwide are recognizing the Ponseti Method as a
viable option to surgical repair. In fact, he said, his
method is being used by orthopaedic specialists in some two
dozen countries.
"There has been a major turnaround, no question," he
said. "Many colleagues who used to doubt the technique now
realize it is best for the children and that traditional
surgery has not produced the best possible long-term
outcomes for these kids."
The Egberts and other parents continue to honor Ponseti
and promote his technique. Many of them traveled to UI
Hospitals and Clinics last year for a clubfoot seminar. In
addition, the University of Iowa Children's Hospital clubfoot clinic
has been named after Ponseti.
The measure of dramatic change within the profession is
exemplified by a professional paper being presented to the
International Society of Orthopaedic Surgeons. The paper
documents the impact of parents and the internet on the
popularity of the Ponseti Method.
What's remarkable, according to Ponseti, is that Martin
Egbert co-authored the paper with Dr. Morcuende.
Professional papers of this type have traditionally been
prepared and presented only by practitioners of the
profession.
"I can't remember a precedent for this, so it's really
quite an honor for Martin," Ponseti said. "It shows how far
things have come in a few short years. Best of all, more and
more babies born with clubfoot are going to have better
long-term results as a consequence of this turnaround.
That's what it's really all about."
More information about the Ponseti Method can be found at
any of these three sites:
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