The Uganda Clubfoot Project - Nov 2000

[Guest guest]

Today I got an e-mail report on the final week of the Uganda Clubfoot

Project trip to Uganda and Malawi, Africa from last month. The whole

report for all three weeks has been uploaded to the files section

/files/nosurgery4clubfoot

and then look for the file on the Uganda Clubfoot project and the

subsection called Uganda Nov 2000. There are also other files in

that folder about the initial proposal for the Uganda Clubfoot

Project and the report from last years trip in November 1999.

The Uganda Clubfoot project is a 4 year effort spearheaded by Dr.

Shafique Pirani of the Royal Childrens Hospital in Vancouver BC and

Dr. Norgrove Penny (originally trained at the Toronto Sick Children's

Hospital and now with the Christian Blind Mission) to treat neglected

clubfeet in older children in Uganda as well as to treat newborn

children with the Ponseti method. The projects objective is to train

local Ugandan Orthopedic Surgeons and Orthopedic officers in the

Ponseti method for newborn children with clubfoot and the surgical

skills for neglected clubfoot in older children and for those where

the Ponseti method may not work. In 4 years they are hoping to have

trained enough local Ugandan medical personal to take care of the

future treatment of clubfoot for their own country.

Quoting from the report

" Throughout the three weeks 48 feet were surgically corrected in 32

children. In excess of 70 children had their feet non surgically

treated using the Ponseti method of manipulation and casting at the

Mulago Hospital clubfoot clinics. 8 of the teaching faculty from last

year were given a review workshop, 15 orthopaedic officers and

physiotherapists were taught the Ponseti method, 6 orthopaedic

surgical residents and 4 orthopaedic surgeons were trained in the

Ponseti method as well as surgical techniques for correcting

clubfeet. "

Because of the success of the project in Uganda over the past

year, they had been invited to travel to the neighboring country of

Malawi to train medical staff there. Medical staff from Rwanda and

the Congo also attended that training clinic. In Malawi the

" ...Ponseti training workshop got off to a busy start with 33

registrants including 3 orthopaedic surgeons, 2 medical students, 7

physiotherapists, 2 senior orthopaedic clinical officers, 1 nurse, 1

assistant physiotherapist, 2 rehab assistants,1 workshop technician,

13 newly trained orthopaedic clinical officers and 1 orthopaedic

technologist. "

Thanks to Shenilla Abdula, the Project's Canadian Coordinator and

Videographer who wrote the reports for this years trip. There was a

video produced from last years trip and hopefully another will be put

together from this years trip.

For prior background on the Uganda Clubfoot project here are some

links to past message

/message/nosurgery4clubfoot/1759

and (3-17-99)

http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Egbert.html

the following was from May 2000

> >

> > > This past weekend, I talked to Dr. Pirani about his experience

> with

> > > regards to the Ponseti method and the Uganda Clubfoot project.

> If

> > > you remember, I had posted some information at

> > >

/message/nosurgery4clubfoot/1466? & start=708

> > >

> > > Dr. Pirani indicated that he was born in Uganda and his family

> was

> > > forced to leave when he was in 6th grade. He became a doctor

and

> > > pediatric orthopedist and has been at the Royal Children's

> hospital

> > > in Vancouver for about 10 years. He has been in charge

> > > of clubfoot treatment there and sees about 20 children per

year.

> > He

> > > estimated that there are about 40 children born per year with

> > > Clubfoot in British Columbia.

> > >

> > > He said that he had part of his training at the Toronto Sick

> > > Children's Hospital, which he indicated has a very good

> reputation

> > > as a Children's Orthopedic Hospital. (Dr. Herzenberg also

> > receieved

> > > part of his training there although not at the same time as Dr.

> > > Pirani. Also one of the 2 ped orthos here where I live was

> partly

> > > trained at Toronto and the other partly at Dallas's ish

Rite

> > > Hospital)

> > >

> > > Dr. Pirani said that clubfoot has been a personal interest for

> him

> > > for quite a while and he has tried to buy every book that was

> > > available on the subject. He bought Dr. Ponseti's book in 1997

> and

> > > began to read it. It was so interesting in it's concepts that

he

> > > read it a 2nd and 3rd time. It made sense to him so he began

to

> > > incorporate the manipulation and casting method into his

> treatment.

> > > (He said that he already used long leg casts but not in the

same

> > way

> > > as Dr. Ponseti's book indicated.) After he read Dr. Ponseti's

> book

> > > he

> > > remembered that at Toronto, he had recieved his manipulation

and

> > > casting training from a cast technician and not a doctor. (Both

> of

> > > the surically oriented clubfoot books I have barely deal with

> > saying

> > > anything about manipulaton and casting, may 1.5 pages out of 50

> to

> > 60

> > > pages and then mostly photos and no specific explaination to

> > follow.

> > > But then those books underlying assumption is that manipulation

> and

> > > casting cannot be successful anyway, they say surgery is needed

> > > 90-95% of the time.)

> > >

> > > Dr. Pirani indicated that as he began to use the manipulation

and

> > > casting method explained in Dr. Ponseit's book that his rate of

> > > surgery fell so that in the last 50 (children/feet?) he has

> treated

> > > he has only had to do the surgery 5-10% of the time. He said

> that

> > > he also ran into Dr. Herzenberg in 1998 and realized that they

> were

> > > having a parrellel experience in reading and implimenting Dr.

> > > Ponseti's book. He said that he feels that the common

perception

> > by

> > > most ped orthos has been that Dr. Ponseti's results were not

> > > duplicatable outside of the U of Iowa.

> > >

> > > In June 1998, Dr. Pirani returned to Uganda to see some of the

> > places

> > > where he had lived as a child. He said that he was aware that

a

> > Dr.

> > > Norgrove Penny (a Canadian Ped Ortho with the Christian Blind

> > Mission

> > > who had also been trained at Toronto's Sick Children's

Hospital)

> > had

> > > been in Uganda since 1996 on a 6 year mission to treat children

> > with

> > > orthopedic problems. Dr. Pirani decided to visit with Dr.

Penny

> to

> > > ask him what was happening medically in their field in Uganda.

> He

> > > said that over lunch that Dr. Penny explained the enormity of

the

> > > orthopedic problems. Uganda had a population of 20,000,000

with

> > only

> > > 6-8 orthopedic surgeons. (I think he had said that in the

> western

> > > world that a population that big would need 200-300 orthopedic

> > > surgeons and about 30-40 pediatric orthopedists.)

> > > Dr. Penny said that in the prior year he had done 350

orthopedic

> > > surgeries, with about 100 clubfoot related. (Supposedly in the

> > > western world a very busy ped ortho may treat 20-30 clubfoot

> > children

> > > per year.) But with 10,000 untreated children with clubfeet

from

> > > the prior 20 years and about 1,000 new children with clubfoot

per

> > > year, they were losing ground every year and they did not have

> the

> > > surgeons available to treat the children surgically anyway.

> > >

> > > Dr. Pirani said that since he knew that the Ponseti method

worked

> > > well and was relatively easy and reduced the need for the more

> > > technically difficult surgical procedure, he discussed trying

to

> > use

> > > it with Dr. Penny. Over the next few months, Dr. Pirani and

Dr.

> > > Penny conversed by e-mail until Dr. Pirani returned on a Fact-

> > Finding

> > > trip in March 1999 to see if they could get the support of the

> > > Ugandan government and existing medical system to try

> implementing

> > > the Ponseti method of treatment for new babies as well as

trying

> to

> > > train local orthopedic doctors in the surgical methods for the

> > 10,000

> > > untreated children as well as any children for whom the Ponseti

> > > method didn't work. He said that to some degree, that in

Uganda

> > the

> > > Ponseti method is the only hope they have to get the problem

> under

> > > control because the surgical resources do not exist. During

that

> > > March 1999 visit Dr. Pirani casted a few children with the

> Ponseti

> > > method so that Dr. Penny could see that the method worked.

> > >

> > > Even thought there are only 6-8 orthopedic surgeons in Uganda,

> > there

> > > are 200 orthopedic officers who treat and cast broken legs,

etc.

> > Dr.

> > > Pirani felt that since the Ponseti method is not as technically

> > > difficult to perform as the surgery and since there were no

> > > preconcieved notions that it wouldn't work, that perhaps these

> > > orthopedic officers could be trained in the Ponseti method of

> > > manipulation and casting. If they were only 80% successful

that

> > > would reduce the number of new clubfoot surgeries needed from

> 1,000

> > > to 200 per year. They began the first training of the local

> > > orthopedic officers in about 6 months ago in November 1999.

> > >

> > > Dr. Pirani also indicated that during a month long visit once

per

> > > year over the next four years , they hope to gradually train

> > > orthopedic officers throughout Uganda in the Ponseti method (I

> > think

> > > he said 20-30 per year). They are also going to help train the

> > > existing orthopedic doctors in the latest surgical methods to

> > > increase their ability to treat the 10,000 untreated children

as

> > > well as those for whom the Ponseti method does not work. The

> > beauty

> > > of this is that it can be done on a long term basis by the

> Ugandan

> > > people themselves with in their own county. Dr. Pirani said

that

> > > often in 3rd world countries, orthopedists come for 1-2 week

> visits

> > > and do as many surgeries as they can which is great, but that

it

> > > doesn't dent the overall problems or leave much in the way of

> > trained

> > > local people who can help to deal with their own country's

> medical

> > > problems on a long term basis.

> > >

> > > Dr. Pirani said that they also set up a system of training,

> > > educational medical booklets, instruction, standardized means

of

> > > measurement of initial severity and degree of correction and

> > > reporting of outcomes that can be tracted over the coming four

> > years

> > > to follow up on every patient and be able to document the

ability

> > to

> > > make this work. He is hoping that if it can be shown to work

in

> > > Uganda, that the concept could be duplicated in other 3rd world

> > > countries. He said that he had set up a computer program in

> Uganda

> > > to help track the children who are being treated and that the

> early

> > > indications are that the orthopedic officers who were trained

> have

> > > been able to effectively use the method to correct the clubfeet

> > they

> > > have been dealing with in 6-7 casts.

> > >

> > > Dr. Pirani and Dr. Ponseti met in Vancouver for the 1st time

> during

> > > the POSNA meeting the beginning of May. Dr. Ponseti brought a

> > group

> > > of about 15 doctors from the POSNA meeting to Dr. Pirani's

office

> > to

> > > meet with about 14 children in various stages of being treated

> for

> > > clubfoot using the Ponseti method. He said that there were

> doctors

> > > who came who were from the US, Canada, Australia, the UK, and

> > > Belgium. If there are any parents in the Northwest or BC who

are

> > > interested in talking to Dr. Pirani, his address is as follows:

> > >

> > > Shafique Pirani, MD

> > > 205-245 East Columbia Street

> > > New Westminster

> > > British Columbia

> > > Canada V3L 3W4

> > > Tel:

> > > Fax:

> > > E-mail: piras@a...

> > >

> > > I hope that I have reported correctly the things that Dr.

Pirani

> > had

> > > told me.

> > >

> > > and (3-17-99)

[Guest guest]

> I did not mention that there were also medical doctors from Kenya

and

> Tanzania as well as Malawi, Rwanda, the Congo and Uganda at the

> training clinics done by the Uganda Clubfoot Project last month.

> Also, I think that Lori had some e-mail contact with one of the

> medical officials from Kenya within the past month or so.

>

> and (3-17-99)

I just wanted to mention quick about the individual that I was in

contact with from Kenya and what that was about, as it was something

I was really excited about.

Some months back, I did a search on clubfoot. One of the pages I

found was a site about a woman named Percia Hutcherson who is a

physical therapist in Kenya on a 'medical mission' project called

CBR (Community Based Rehabilitation). She helps with many physical

issues including clubfeet. There was a picture and brief story about

one girl whom they were able to help through their efforts. She had

gone, as many had, untreated and was able to receive surgery to

correct her deformity in her teenage years through CBR.

I simply took a shot and emailed Ms. Hutcherson and briefly explained

who I was and told her about the Ponseti method and the training and

Phase II(which at that time had not yet happened) in Uganda.

She phone me shortly after that. To my utter amazememt I might add.

She was sincerely interested in the Ponseti technique and I tried to

share as much as I could. I had already put together a 3-ring 3 "

binder containing all the information from the U of I web site, as

well as the foreward from Dr. Ponseti's book and the Uganda Clubfoot

Project Proposal AND copies of the 4 video's that I had, including

the first completed phase of the Uganda clubfoot project. In

addition, I had already looked on the map (I'm not a geography buff)

and discovered that the town in which Percia was located, was only a

few hours from where Dr. Pirani would be doing training.

I sent off the binder and then phoned a few weeks later to see if it

had indeed arrived. At that point, it was up to Percia to contact

Dr. Pirani and apparantly she did. It wasn't until the training was

happening that I had received a update from Shanilla (Dr. Pirani's

sister) that I asked her if Percia had ever made it to the training.

I was told that she was there at that time! The next day I also

received an update from Percia about her training experience.

I hope that she and her colleagues find what we all know now. And it

is indeed such a blessing for these children who would otherwise go

undetected or untreated that Dr. Pirani has undertaken the venture of

bringing Dr. Ponseti's method to Africa. Not only can this method be

practiced by 'non' surgeons in the medical field, it is also

affordable and can reach more children than surgery ever could in

many (if not all) of those countries.

I have asked Percia about the social stigma's attached to untreated

clubfoot, and they aren't pretty. Some even view those with clubfoot

deformity as evil. Isn't that sad She told of one boy who was

able to receive surgery to correct his feet who had previously been

teased and ostracized by his schoolmates; which in turn for him, lead

to doing poorly in school. Since his surgery, he reports that he is

no longer teased and his teacher reports that he is doing much better

in school because of it.

In addition to keeping up with Percia as much as I can, I hope to

sometime next year, make a connection with some individuals in

Ethiopia. I have a connection or two there...however, it is a very

time consuming task and seeing as how I'm expecting child #3, it

might take me some time. But I at least want to connect some of the

doctors from Ethiopia with Dr. Pirani. If I can get that far, it

will make me happy.

Well, gotta run.

Lori