Letter to Oprah Winfrey from 2000

[Guest guest]

For reference, here's a draft of a letter to Oprah that's on the long side. I

think a number of parents sent letters in together telling of the miracles Dr

Ponseti had done for their children. And I'm fairly certain nothing ever came

of this. I find it to be eloquent and to fit the purposes very well. It is

also, thankfully, out-of-date as so many more doctors are now practicing the

Ponseti method and the internet is much more of a presence in the medical world.

At one point, UI had a marketing firm working on getting the story out. I

contacted one of UI's PR people about a year ago who told me about their efforts

to get the story out. It seems like such a clear-cut sell. Not enough

lifa-and-death drama though, I guess.

Naomi

The Family

Naomi Hannah Jonah

Egbert wrote:

Here is a copy of some of the things sent to Oprah in early 2000. I

believe that about 15 parents sent their stories together.

__________________________________________________

from February 12, 2000

Dear Recipients of Ponseti miracles,

Lori and I (Allyson Egbert) have been working on a project recently

that we'd like to solicit anyone's help who would be interested.

Since the onset of this momentum last year, we've felt that

eventually there would be enough support to be able to approach the

national TV networks in hopes that they would televise a national

program on Ponseti. There have been attempts by the U of I to get

articles in well-read newspapers and magazines, but we feel that as

parents we can be doing a lot more. Time is of the essence for

children!

Both of us have written rough drafts to be sent to Oprah. Our view

is that her show would be a good place to start, since her

philosophies of life include:

1. She believes in faith or fate, as some would word it.

2. She has expressed her opposition to unnecessary surgeries

(her views on hysterectomies are all-telling)

3. She views parenting as the hardest and most important

calling in life

4. She believes in miracles

5. She has a deep concern for the well-being of children

Of course, nothing we feel should ever be done without Dr. Ponseti's

approval. The day before he left asked his permission and he

said, " Go for it " .

Where do we go from here? All of us have slightly different

miracles to be shared. If we could all spend a moment to type

up " our story " with Oprah's show in mind, we'll then collect each

other stories and send the show numerous " Ponseti packages " by mail

and e-mail.

One more thing to consider. If Oprah can see that her show could be

a major catalyst in bringing info to those without internet access,

and become part of the miracle herself, she may be more interested

in doing a story. Enclosed is my first draft, which if you read,

may help you understand this ripple effect of miracles as I've

described. Or, you may want to write yours first so that mine

doesn't influence yours. That way we'll get variety.

Please let me know if you'd like to take part in this endeavor. My

hope is to be able to show Dr. Ponseti our " Ponseti package " when he

returns from Europe, after March 17, to quickly be sent to Oprah.

Thanks Everyone,

Allyson Egbert

________________________________________

March 17, 2000

Dear Oprah,

We've always believed in miracles, but never has this become so

vivid to us as it has in the last year.

On March 17, 1999, St. 's Day, we rejoiced in the blessed

arrival of our 6th child and 3rd son, . Having brought others

into the world before, we entered the delivery room anticipating the

joy we would feel to once again place a perfect little child in our

arms. Nothing could have prepared us enough for the events about to

unfold.

came into the world screaming as loud as the rest of our

children, but the instant he was delivered and the doctor raised him

in the air, our eyes focused on his feet—turned in, gnarled and

twisted. Suddenly once happy noises of the delivery room

disappeared into oblivion as the realization that our " perfect "

little child had been sent to us with a deformity. Our kind doctor

and nurses tried to ease our shock with optimistic words. They told

us that things could be much worse, but when our delivery time was

complete and they left us for other deliveries, the reality of what

had just transpired and the unknown of the future left us in

despair. The diagnosis—Congenital Clubfoot.

The next 24 hours we didn't sleep, trying to gather as much

information on this condition as we could. We found that this

condition was treatable, but was told by our Pediatric Orthopedic

Surgeon that our son's condition, moderately severe, had a 90%

chance of needing surgery at 6 months. Then, would be

watched for relapses in his growing years, possibly resulting in

further corrective surgery. Surgery? On a baby's feet? Without

any guarantee that there wouldn't be multiple surgeries? What about

risks? What about complications? What about lifelong scarring and

possible arthritis? What about complications from the surgery that

might not appear until adulthood? These words stung.

This is where you, Oprah, came into the picture.

We took home from the hospital the next day, March 18.

Exhausted from 2 nights with little sleep, we collapsed on the bed.

Aimlessly, we picked up the remote control and turned on the TV,

trying to distract our minds and bodies from the worries we faced.

Your show was on the air. The topic—Miracles. There was only ten

minutes left in the hour, but what we saw sent chills down our

spines. The story was about a baby boy born with clubfeet whose

mother was told he might never walk. This courageous mother,

with undoubting faith massaged her son's feet up to eight hours a

day. One day, he miraculously stood up and not only walked, but

ran, growing up to be a star athlete (We're sure you don't need US

to tell YOU the story). My sister called—Did you see it? My friend

called—Did you see it? Needless to say, your story renewed us with

faith and hope. We kept feeling, there must be a better way.

Our son's feet began to be cast once a week, while day and night we

searched for other methods of clubfoot treatment. One and a half

months prior to 's birth we had purchased a computer and had

just logged on to the Internet. Two weeks after he was born, after

having talked to numberless doctors across the country, who all

concurred that surgery was the prevailing method of treatment, we

came across a web site from the Virtual Hospital at the University

of Iowa. What we read was shocking. Dr. Ignacio Ponseti, emeritus

professor of orthopeadic surgery, now a young 86 years old had

devised a treatment for clubfeet that had a 50 year documented

history. His manipulation and casting technique had resulted in

only a 5% chance of a need for surgery. He claimed, " When compared

to other techniques for correction of the deformity, our

manipulation, casting and splinting procedure has never resulted in

any disability for the patients. " For 50 years? It was hard to

believe, yet desperate in our search for an alternative non-surgery

method we flew to Iowa City (which to us was in the middle of

nowhere) to meet Dr. Ponseti ourselves.

The first day we saw him we were very impressed by his humble,

unassuming gentle nature. Upon examination of our son he said he

could fix them in 2-3 casts including a simple 5-10 minute heel cord

tenotomy with no invasive surgery! We wore him out with our

questions and skepticism that he could do what he claimed. (The

details and specifics of his technique are enclosed.) We couldn't

figure out why not more of the 500-600 pediatric orthopedic surgeons

in the country had not adopted this technique, if what he was saying

was true. At the time there were approximately 15! To make a long

story short, we decided to give it a try. We figured that if he

couldn't perform a miracle with our son, then we could still have

the surgery as planned.

We left Iowa with our first set of casts and returned the next week

with anticipation. The casts were removed and we couldn't believe

our eyes. His feet looked almost perfectly normal! He was recasted

and we began our journey home, crying our eyes out in the car on the

way to the airport full of gratitude for the miracle that had been

bestowed upon our son.

The following week we returned, the tenotomy was performed, and he

was cast for his final time. Essentially in three visits to Dr.

Ponseti, our son's deformity was repositioned to a normal position,

never having to face ankle ligament and joint surgery or have the

risk of future complications from this surgery. Upon our return to

our home we took to our original surgeon who was quite

interested in our journeys to Iowa. He looked at his feet and

said, " I would hope to achieve this result with surgery. I feel you

have made the right decision for your son. "

Since then, we have felt compelled to share this non-surgical option

with other parents, but have been disappointed to find that only 2-

3% of current pediatric orthopedic surgeons totally understand and

use this " Ponseti Clubfoot Method " . As a result, parents who do not

have access to the Internet and believe that surgery is the only way

are not aware of this miraculous technique. Dr. Ponseti himself has

come out of retirement giving up his personal time with the goal to

reeducate current doctors who perform surgery so unnecessarily. Yet

unfortunately, there still appears to be approximately 4,000+

operations a year performed on children with clubfeet in the U.S. I

guess doctors are creatures of habit. ( World-wide there are

approximately 130,000-150,000 children born with clubfeet annually. )

Four months after was born, and one month after this miracle

was performed, on July 22, we happened to turn on the TV in the

middle of the day, surprised to find that your same show on Miracles

was being rebroadcast. Our hearts burned, as a reminder that we had

been led to a better way for our son. We realized humbly that

without Dr. Ponseti, we would shortly be heading into surgery, with

no reassurance that the surgery would be totally successful.

Thank you, Oprah, for giving us hope.

As a result, we have joined forces with other parents whom we have

met through the internet whom have also been the recipients of Dr.

Ponseti's miracle, in trying to convey this message of miracles. *

(Some of their miracle stories are attached.) We hope that we can

continue this ripple of miracles by being effective in sharing this

message. It's our hope that Dr. Ponseti's life-long dream for " the

sake of all children of the world " to live happy, pain-free lives

will be realized.

This month we celebrate 's one-year birthday. I don't think

we'll ever look at St. 's Day again as a time to merely

celebrate " luck " anymore.

Sincerely,

, Allyson and Egbert

1270 Imperia Drive

, Nevada 89052

martinegbert@...