's Dr. Ponseti Essay REVISED.doc

[Guest guest]

, and Everyone,

here is the email version for the Life Time Achievement Award Essay - (I'll send

an attachment version also for easier printing and/or editing if you choose).

I hope this is somewhere with in a hundred miles of what you were anticipating.

I asked Joyce Roller for more specifics but have not heard from her, so I went

with what I had and am sending it before you think I'm blowing off my assignment

here. Actually, ask my husband, I've lost a lot of sleep, such a

responsibility, such an important undertaking!

If it sucks I'm not offended if you scratch it out and start from scratch.

Woven throughout you will notice I used your key points. Likewise, if there is

any mis-information that needs corrected by all means bring it to my attention,

or if anyone has information prudent to the cause that I totally over looked,

that too should be brought forth! Because there was not a page limit / word

limit, I did not limit myself or even attempt to. It's double spaced and

justified for easier reading. Nor did I bring a case history of any particular

patient in to it, aiming to be objective and factual, yet tell the story in such

a way as to convey the man's compassion and the legitimacy of this birth defect.

I told it from the standpoint of " We the parents of children born with

clubfoot " ....I do not mean to exclude those here who are now adults who were

born with clubfoot, but the objective is to spread the word that new born babies

will not endure the tortures of misinformed doctors using out dated treatments.

And with all that as my disclaimer, sitting here insecurely as I toss out my

wares for inspection, here is the actual essay as it sits on my desk tonight.

Blessings to all,

ee

Dr. Ignacio Ponseti Lifetime Achievement Award Essay

by: ee Reese

September 2005

Five years after the Spanish military initiated an uprising against their own

Republican government sparking years of Civil War, lin D. Roosevelt made

his historic 3rd Inaugural Address to the Nation, Pearl Harbor was obliterated,

the famous Infamy Speech was delivered, and the United States, having already

suffered twelve years of economic collapse on the heels of fighting World War I,

entered World War II.

The year was 1941.

It was the year a young man immigrated to America from Spain to escape the post

civil war ravages in his homeland.

Historians suggest the Spanish Civil War which ejected this young doctor on to

American shores was merely a prelude to the World War that he traveled across

the Atlantic Ocean in effort to escape. They further suggest the Spanish war was

a testing ground, implying the bombing of Guernica promoted advances in

twentieth-century warfare techniques and technology.

Fortunately, this era brought forth amazing advances in medical technique and

technology as well - which also came from Spain.

His name was Ignacio Ponseti. He came to America an immigrant, a young doctor

escaping a war torn country to enter a country that was engaging into a war of

epic proportions that very same year. It was a small world after all.

Ultimately he arrived at the University of Iowa College of Medicine where his

assignment was to perform certain follow up studies on patients who had been

treated for clubfoot according to the " modern " medical standards of that time.

Disappointed with his findings, the young doctor dedicated his life to finding a

better way to cure this crippling birth defect.

Only seven years after his arrival to the United States, post war America was a

very different place. Luxury automobile owners were sporting the newly invented

electric car windows. Art Mooney was topping the charts with his hit song I'm

Looking Over A Four Leaf Clover; and fittingly with this new-found era of

American prosperity, our young Dr. Ponseti achieved his goal. In 1948, through

his years of dedicated hands on treatment and research, he discovered, then

refined, his non-surgical method for correcting clubfoot.

The glory of his work is that children no longer have to undergo painful

surgeries that most often result in a life time of painful feet and subsequent

surgeries.

The horror is that fifty-seven years after developing his method, the medical

community at large continues to practice according to the same techniques they

used half a century ago when he started, ignoring the Ponseti Method despite his

decades of follow up studies proving its 95% effectiveness rate when performed

properly.

In 1941 he was a Spanish Immigrant. Today, he is Professor Emeritus Orthopaedic

Surgery at the University of Iowa College of Medicine. The doctor, and his

method, remain one of the world's best kept secrets as the medical community

continually refuses to adopt or even recognize the validity of his method.

As the parents of children born with this vulgar, crippling, congenital birth

defect, we consider this unacceptable.

When he was 70 years old the University of Iowa, where he still practiced,

forced Dr. Ponseti to retire. Two years later, he convinced the University to

take him back despite his 'advanced' age. He continued to perform his miracle

on otherwise crippled babies for the next fourteen years.

When he was 84, he once again headed in to retirement - then the internet

happened. Word of his non-surgical method began to spread. As parents

discovered they had a choice, they began to travel from across the USA and from

across the ocean seeking out his method for their children. Today, twenty years

after the University tried to force him to quit, parents are still traveling to

see him, or one of his few qualified associates. And finally, after fifty odd

years of dedicated service, the University of Iowa Hospital finally recognized

Dr. Ponseti's contribution to both their facility and the medical field by

naming a branch of their clinic after the man who has given his life to giving

children happy feet.

Word continues to spread by mouth and internet about this astonishing, dedicated

man and his incredible journey that started half a world away a half a century

ago, but as the parents of children born with clubfoot we face two major

obstacles.

First, to be completely candid, time is ticking. Dr. Ponseti will celebrate

his 91st birthday in June of this year (2005) yet he continues to serve parents

and babies in his clinic at the University of Iowa - the oldest of hands gently

repairing the youngest of patients.

" Do not cry, Baby. " The gentle, quiet words roll off his tongue in a thick

Spanish accent that immediately begins to sooth the anxious child with their

music. " If you cry, then I will cry, and then my nurse will cry and then your

Ma'Ma will cry. We will all be crying! Do not cry, Baby. " and turning to the

mother, " Here Ma'Ma, take your baby, comfort him, I will not work on a crying

baby, let him calm down. " He points to the old rocking chair where he so often

sits to do his exams. The mother rocks her baby. The room smiles. The mother,

the father, the nurses, the students, and Dr. Ponseti, the 90 year old doctor

pauses in his work for as long as it takes as if this infant is the only infant

in the world and time has stood still for it.

He continues to teach any doctor willing to learn; he consults daily via email

and telephone not only with other doctors, but personally answering the calls of

distraught parents and sorting through the photos and videos parents send

showing their baby's feet at various stages of various treatments. He turns no

one away.

" You must come right away. " He is on the phone answering the email plea sent

with digital photos of a 19 month old boy with deformed feet despite a year and

a half of treatments and physical therapy. " I can help " , says the doctor, " but

there is no time to be lost, you must come right away. You get here and I will

see you. "

Because of the previous nineteen months of substandard treatment this child will

never be completely corrected nor ever know what it means to have pain-free feet

despite Dr. Ponseti's best efforts. But though his efforts, another believer is

born, who spreads the word of his miracles so no other child has to endure what

her son must endure.

Slowly, through the efforts of parents like us spreading the word and insisting

we have alternatives to surgery, the list of qualified Ponseti Method

physicians is growing annually. But time is ticking and the method is at risk

of being lost forever.

The second obstacle we face is the medical world, sadly enough. Through the

internet the term Ponseti Method has gained popularity, even if the actual

method has not. Suddenly the clinics are flooded with cheap imitations throwing

around the words " Ponseti Method " although they are not practicing the Ponseti

Method in any true form. These doctors are not skilled in the method, they have

received no formal training, and unfortunately, most parents don't know the

difference until it is too late, until they can no longer deny their child is

not getting any better and may in fact, be getting worse. So they finally do

their own research. They finally make that call, and Dr. Ponseti says to come

right away, because he always says come right away, because he always holds out

hope to the very end. Because every baby becomes his baby.

But these children do not always arrive in time to be rescued from their

horrible fate, because while clubfoot is nearly 100% correctable, there is a

limited window of opportunity that allows the miracle to take place. Once the

window is closed, the basic human anatomy of the foot no longer lets a

non-surgical correction happen. And if the baby arrives to Ponseti's care too

late, that baby will forever suffer the consequences of inadequate care.

With so many unqualified doctors suddenly claiming to use the Ponseti Method,

yet doing something quite different, the results are predictably disastrous.

Thus we risk that the method will be eventually proven ineffective as these

results are published and the public and medical communities combined rally

against the Ponseti Method for it's ineffectiveness with out realizing this lack

of success is not due to the method not working, but due to gross and

incompetent misuse of the method by untrained physicians.

And when the that happens, the method will be lost forever. There are already

claims that Ponseti's method is only perhaps 70, 60 or 50% effective - when in

fact, qualified doctors who use the method according to the protocol are

consistently achieving 95% success rates year after year after year.

And again we say, as the parents of babies born with this ugly, crippling birth

defect, this is completely unacceptable.

So how do we know? How is a parent who has just been dealt the crushing news

their baby has a major birth defect supposed to know the difference when any

doctor who has heard of clubfeet is suddenly proclaiming to be advanced in the

method of treating either though Ponseti's method or more traditional modes?

When a baby is born with a birth defect, and one as physically ugly as clubfoot

often is, a parent is eager to relieve their own sense of guilt and their

child's suffering. They often are so eager they blindly trust the local doctor

- after all, he's a doctor, he should know. And when we ask, when we finally

get around to noticing something is wrong and we ask, we are riddled with long

technical answers that leave us feeling inferior and confused and ashamed of

ourselves for questioning his superiority. So how do we know what to do?

Through public awareness like this, for starters.

In traditional treatments, the infant is often put through months of serial

casting where their foot is manually wrenched in to a normal looking position

and casted in to that shape as it grows. As recent as the 1960's, Dr. Dennis

Brown writes that he used mechanical devices to wrench the foot in to position

prior to casting. Somehow, the Foot Abduction Brace (FAB) which is used in the

Ponseti Method became known popularly as the Dennis Brown Bar, or DBB. (We call

it the FAB, wanting no association between Dr. Ponseti's gentle care and the

horrific mechanical tortures used by Dr. Brown.)

At the end of all this the child almost always undergoes corrective surgery

anyway because the bones remain misaligned. The surgery involves taking the

foot apart and reassembling it to look normal on the outside even though it has

been grossly disassembled and remains deformed on the inside. The result is the

bones are not allowed to grow naturally as they should; scar tissue builds up;

joints stiffen; tendons are unable to stretch; more surgeries become necessary

to loosen a tendon, to scrape out scar tissue, to add steel pins or remove

steel pins. And still the foot remains misshapen and painful to use, often not

fitting in any type of regular shoe.

The only thing the Ponseti Method has in common with the traditional method of

treatment is the term Serial Casting, which implies a series of casts are

applied to the child. In the 1940's Dr. Ponseti discovered what all the others

had overlooked - the delicate infrastructure of the foot and the logical,

sequential placement of it's twenty-six bones. The bones in a clubbed foot are

all there, they're really OK, but like a jigsaw puzzle, they come mixed up in

the box and need put back together to make the final picture. Traditional

methods of correction do not account for this. Traditional thinking seems to

believe the bones are wrong, that the bones need fixed. But they aren't wrong,

and they don't need fixed, they just need gentle hands and careful eyes placing

them in the correct spot like the intricate puzzle they are - not sawed upon to

fit where a doctor wants them or crammed in to positions where they were not

intended by nature to fit.

Treated properly by the Ponseti Method, the tiny new born bones are very gently,

slowly and methodically manipulated by gentle hands in to their proper alignment

where they are expertly casted in to place for a period of five to seven days.

Again and again the process is repeated over the course of approximately five

weeks - each bone individually identified, placed in its necessary position

according to a certain sequence of movements, and casted in to place, maintained

for approximately a week as the foot adapts.

Most infants sleep through the process as the doctor finds the correct bones and

moves them carefully, and always sequentially, in to their proper position

(compared to the physical restraint babies require using other methods). Others

eat or play. And almost none cry, because it is neither frightening nor

painful. No drugs are given, no shots, no restraints, the parents are always

present, holding or other wise comforting the baby, and if fear does creep in

and cause the child anxiety, the process is stopped until the baby is again

feeling calm and secure because an anxious child will be tense, and tense bones

and muscles cannot be properly aligned anyway. So the whole Ponseti Method

rests largely on maintaining a calm, happy baby though the correction process.

The entire visit is usually over with in less than a half an hour.

While we don't want Ponseti's method mixed up with any new-age mentality that it

ranks with acupuncture, herbs, aroma therapy or the beating of drums during the

twelfth hour of the full moon as Venus enters the shadow of Mars - neither does

this method belong to the ranks of sterile surgical rooms, recovery rooms,

antibiotics, stitches, face masks, needles, tubes or electronic monitoring

devices.

Completely scientific, completely proven, completely safe and effective, the

Ponseti Method is a very gentle and organic procedure saving children from their

crippling condition.

The average infant born with clubfoot has corrected, fully functional feet with

in five to seven weeks of serial casting when the casting is performed in this

manner. In other words, this child treated correctly by the Ponseti Method will

have normal feet before he is ever old enough to realize they were missing in

the first place.

When the manipulation of the bones is complete, the infant is moved out of

casting and in to the Foot Abduction Brace (FAB) - a small pair of baby booties

connected by a bar that runs between them. Set at very specific degrees and

measurements to match each individual infant, the baby wears this brace for 23

hours a day for the first three months of use. From there the amount of time

the baby wears the brace is gradually reduced to approximately twelve to

fourteen hours of wear - bed time - as the bones grow and experience their

natural hardening process. Unlike the unfortunate children who might wear the

casts for six to twelve months in the traditional methods, babies who wear the

FAB are not delayed in development. They can roll over, crawl, and eventually

cruise with the FAB on their feet meeting every milestone on time. They still

fit in to normal cloths, cribs, high chairs and car seats with the FAB on their

feet, it becomes only a small extension of the child, for a small part of their

life.

By the end of the treatment period, the feet have grown, the bones have hardened

as they do, and the correction is now maintained simply by the natural growth

and exercise of the foot. Because no bones were cut, lengthened or shortened,

no pins were surgically inserted, no tendons were cut, no muscles were peeled

back to expose the bones for surgery - there is nothing to heal, nothing to

infect, and nothing to malfunction. The entire foot can now grow and function

completely normally for the rest of that individual's life.

No surgical theaters. No anesthesia. No pain killers. No antibiotics. No

hospital stays. No IV's. No starving the infant for hours prior to the

operation. No separation of the infant from his parents. Reduced cost of

treatment. Ninety-five percent success rate. The promise of normal, natural

feet. No ugly scars on the outside of the skin, or crippling scar tissue

growing on the inside. Fifty years of use and follow up studies to back it.

And still, no one wants to listen.

And still, as the parents of children born with clubfoot, as citizens in the

most medically advanced nation on this earth, we find surgical treatment of

clubfoot not only barbaric, but irresponsible, negligent to the extent of

malpractice...and completely unacceptable.

Why then will no body listen?

Because we're talking about feet? Because there is no drama to a non-surgical

method? Ask the parents of children born with clubfoot if their child's birth

defect lacks drama.

According to the March of Dimes:

Neural Tube Defects (NTDs) affect 1 per 2,000 births.

Down Syndrome ranks at 1 in 800 births.

Sickle Cell Anemia affects from 1 in 500 to 1 in 1000 depending on racial

factors.

Cleft Palate affects 1 in 1000.

And Clubfoot is calculated to affect 1 in 735 births annually in the United

States, with higher rates abroad.

It can be estimated by 2002 population figures that Clubfoot affects

approximately 4,000 to 5,000 American newborn babies each year. More than

Neural Tube Defects. More than Down Syndrome. More than Cleft Palate. More or

the same as Sickle Cell Anemia

Even the March of Dimes remains unaware as their website suggests as many as 50%

of the infants born with Clubfoot will require a surgical correction; that's

forty-five percent more surgeries than necessary. The Ponseti Method averages a

low 5 percent surgical rate.

But these are feet we're talking about, right? Who wants to pay any attention

to feet when there are much more exciting and dramatic (although less prevalent)

birth defects to talk about?

Why talk about a non-surgical medical procedure when there are much more

colorful, gruesome, theatrical surgeries to broadcast? Blood sells, right?

Images of oxygen masks, heart monitors, teams of doctors in their frocks hunched

over a patient who is cut wide open? Or a condition with no known cure? That's

good television. Sick children with no cure in sight. Twisted feet

torturously dissected is good television. A non-surgical method created by a

Spanish Civil War Veteran in 1948 who still practices at the age of 91 years old

- is also good television because behind the producer who has the guts to

broadcast this are 4,000 more babies being born this year who are at risk of

having their feet cut up unnecessarily - and you could save them.

We are here to nominate Doctor Ignacio Ponseti for the Lifetime Achievement

Award because he has truly given his life to these crippled babies. His entire

adult life, rapidly approaching a century old, has been dedicated to achieving

not personal goals for his own fame and fortune because if that were the case,

he and his method would be world famous by now! But to achieving a happy life

minus the pain of deformed feet for thousands of babies world wide. Abraham

Lincoln said it best, " I can't think if my feet hurt. " If ever a time in

history demanded our future generations have clear minds to think with, it is

now.

If awarded, Dr. Ponseti's wish is characteristically unselfish. When asked, his

only wish was that he be able to contribute more than he already has, that his

work be continued after he is gone though the veins of his foundation: The

Clubfoot Clinic Fund.

This foundation supports research of clubfoot so perhaps the one in a thousand

babies currently born in the US each year with this birth defect can be

diminished if not eliminated completely (scientists believe they have recently

isolated the gene that causes clubfoot); it supports the continued development

of better treatment options such as better casting materials and better designs

of the Foot Abduction Brace; it helps pay for treatments that otherwise could

not be afforded by economically challenged parents; it sends supplies and braces

to the poor and under-developed countries around the world; it supports bringing

in doctors from both America and over seas to train with Dr. Ponseti and his

colleagues in Iowa so they may take the method home and continue its use; it

funds the development of clubfoot clinics in 3rd world countries where the rate

of clubfoot per capita is much higher than it is here in the US.

Granted his wish, the sky would be the limit. More doctors could afford to

train under Dr. Ponseti; an educated medical community could identify and

eliminate from practice those who are performing the method falsely;

teleconferencing technology could be put in place so doctors world wide could

consult with one another directly, sharing video images, photos, x-rays, advice,

help and ultimately, success. Public awareness in the general population could

be raised so eventually no child will have to suffer the consequences of

treatment that became outdated three years after their great-grandparents came

home from WWII - because through public awareness, those methods would become

as happily obsolete as Art Mooney's 1948 top ten song.

Additionally, although Dr. Ponseti did not request this, we would like to

organize a reunion of his patients, both those who have been treated by his

gentle hands in person, and those who were treated by his method thanks to the

few doctors who have taken the time to learn it. We would like to publicly

honor the man who gave our children back their feet.

We nominate Dr. Ponseti not as a small group of mothers who meet at the coffee

shop with too much time on our hands - but as hundreds, if not thousands of

mothers, and fathers, and grandparents, aunts and uncles and children young and

old who have experienced clubfoot first hand, who have educated themselves,

their friends and their neighbors, who have continued for years now the daunting

task of speaking loudly that the world might finally listen and finally

eliminate the primitive treatments still in use today on our young babies.

We nominate Dr. Ponseti on behalf of the 45,000 (yes, forty-five thousand)

babies who will be born in the U.S. over the next ten years who will suffer

this birth defect.

It's been close to sixty years. It's time this great American story is told to

the world. It is time the world knew medical science has escaped the 1940's and

moved in to the twenty-first century.

He was an immigrant escaping the Spanish Civil War arriving in America the year

we entered World War II. Now he is a 91 year old doctor who still walks to work

each day to treat his tiniest of patients, because if not Dr. Ponseti, then

who? The world must learn and new young doctors must move in to fill the shoes,

to advance the method, to save the babies.

We, the parents of children born with clubfoot implore you to explore the rich

and colorful life of this silent American icon so he will not only get the

recognition he deserves after half a century of service, but also so no other

baby will have to endure the horrors of having their feet taken apart and put

artificially back together unnecessarily.

If nothing else happens from our attempt to honor Dr. Ponseti with the Lifetime

Achievement Award, one very key thing has happened right before your very eyes:

you, the reader, are now informed.

We the parents of children born with clubfoot have reached one more person, who

will, some day, tell two friends who will, someday, tell two friends. And thus,

the Ponseti Method has survived for half a century one person at a time - and

truly, that is probably the only reward Dr. Ponseti would ever ask for, that the

word be spread, even if by only one mouth and one ear at a time. He doesn't

want awards, he wants to see an end to the senseless brutality our trusted

doctors are inflicting upon our tiniest of babies. Once that is accomplished,

then, maybe then, he will finally feel it is safe for him to retire and pass his

torch to the next generation trusting we will keep it burning.

Summary and Contact Information:

There are two forms of clubfeet. The first is relatively minor and known as

Positional Clubfoot often due to a lack of amniotic fluid in the uterus cramping

the baby's development. The second is Congenital Clubfeet, it is considered

idiopathic, meaning doctors are not entirely sure what causes it , but suspect

it caused by an unknown genetic factor coming in to play affecting the baby at

approximately 20 weeks post conception. There also appears to be a slight

inheritance factor involved as well, although not always. Because clubfoot is

not present in the early weeks of development when most ultrasounds are

performed, the condition is often not discovered until the child's birth.

The Ponseti Method of Clubfoot correction is superior to the traditional method

of treatment in that the baby's bones are gently persuaded to move in to their

natural position through a process of systematic serial castings. No surgeries

take place. No bones are cut, broken, or pinned back together. No muscles or

tendons are stripped. No joints are penetrated. The method is completely

non-intrusive. Done correctly the foot is allowed to continue its natural

progression in to adulthood allowing these child to live normal, active lives.

With correction performed properly by a qualified physician and with the

parent's diligent and dedicated use of the FAB (Foot Abduction Brace), babies

treated by the Ponseti Method enjoy a 95% success rate, i.e., 95% of the babies

will never need a surgical attempt at correction.

For more information about the clubfoot deformity, please contact the University

of Iowa Clubfoot Clinic at (319)356-3469 or visit

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html for medical

reports, articles, FAQ's, testimonials and photos. Parents or family members of

a clubfooted baby are urged to join the nosurgery4clubfoot group at Yahoo!

groups, nosurgery4clubfoot for advice and support.

This Nomination is sent to you by the Parents of Children Born With Clubfoot and

the children born with clubfoot who became the victims of misinformed doctors,

as well as the children who have most blessedly been cured by the life's work of

Dr. Ignacio Ponseti - and all the clubfooted babies yet to come.

Signed and Sincerely,

ee and Chriss Reese of Oklahoma

- parents of two clubfooted sons, who remains somewhat crippled because we

did not know yet about Dr. Ponseti, and Everett who enjoys perfect feet thanks

to Dr. Ponseti.

Harvey and June Reese of Oklahoma

- parents of one clubfooted child, Mark, who remains with crippled feet because

no one knew about the Ponseti Method.

Leroy Reese of Oklahoma

- father of one clubfooted son, Greg, who remains with crippled feet because no

one knew about the Ponseti Method.

Others add your names like this too and grow the list