Lauren and I drove into the RCH carpark just after 7am. There weren’t many people around, and as we stepped out of the car we kind of looked at each other in anticipation, not knowing what to expect from the day ahead of us. Lauren’s enthusiasm and passion are contagious, and we set off towards the elevator both feeling pretty excited.
As we walked into the registration area, the ACFK desk was right in front of us. We were lucky enough to be able to register the CF parents who attended, so either Lauren, Peta, Mish (First Steps/Boot Bank) or I got to say hello to each parent as they arrived. It was exciting giving out the welcome packs, and watching parents and medical professionals alike look over the ACFK merchandise we had spread over the table.
Around 8:30am we were ushered into the conference room and took our seats. Michael Johnson from RCH was facilitating the event, and showed us an awesome little clip introducing us to Melbourne’s heritage and culture. He explained a great system they had set up where anyone in the audience could text or email a question to the facilitating team at any point – even at midnight from their hotel room – and they would do their best to address it throughout the conference. We were all invited to participate in a poll on what name Melbourne as a city had previously been recognised as. The results were updated live on the projector screen in front of us, all very cool.
Because of the hard work of a few key people, we parents had been extended the invitation to attend the opening session of the conference. It’s probably just as well we were limited to those first couple of hours of the conference, or they would have been bombarded with questions from very enthusiastic parents.
The first speaker was the great man himself – Dr Jose Morcuende. He spoke on “Ponseti – the man – the method”. For a lot of parents in the room I suspect this was a very emotional start to the day. The admiration Dr Morcuende has for Dr Ignacio Ponseti was almost tangible, and you could feel the respect in the room for these great men in both their professional and personal capacity. Dr Morcuende had a very calm presence about him, which just increases his charm to us adoring CF Mumma’s! After giving us a brief run down on Dr Ponseti’s life and how he became aligned with CF, he moved onto the mission and vision that Ponseit International are striving to achieve in Dr Ponseti’s honour. He spoke of the under-developed countries where families are not as fortunate as us, and how they are often encountering much older children who are only just beginning treatment. We watched a very moving video of a 4year old girl in china walking on un-treated feet. It was a short clip, only a few seconds long, but it played over and over again as he spoke of the incredible difference the Ponseti Method of treatment can have in these people’s lives. We saw images of children in their mid to late teens who had only just begun treatment, and it was incredible to recognise the change in these feet after only a small number of casts. He reminded us of the impact a deformity can have on humans whom live in a different culture to us, where arranged marriages and playing soccer are an imperative part of life. He took us back to revisit some of these case studies, and show us the impact corrected feet had on their reality – one woman now married and pregnant, one young man playing soccer with friends and has a girlfriend – and all because of some careful Ponseti casting. It took me right back to watching Zachary’s mind-blowing progress over his serial casting stage, although I think this was even more powerful as I am much more knowledgeable and aware now of what the clubfoot journey can entail, and I didn’t expect the results to be so substantial in a grown child.
Dr Morcuende covered many other topics, which I am going to try and list into bullet points below:
• That the shift to the Ponseti method becoming so well recognised as the most effective form of treatment in most cases of CF, was driven by parents. As the internet really exploded around the world circa 1998, parents were more able to search for non-invasive and effective treatment for their children, and began to insist on this treatment
• The results of successfully treating CTEV using the Ponseti Method are between 92% and 100% across the world. This is not just particular to the states, but across many countries an represented in many independent studies. When questioned, Dr Morcuende said that this statistic includes Atypical and Complex feet as the key is to understand the nature of the correction, and if used accurately the results can be just as fantastic. He commented that some remarkable progress was made in 2002/2003 in understanding the more complex foot, which means that essentially those same success statistics apply to all clubfoot.
• The rates of surgical procedures peaked in around 2000, but have been decreasing at a rate of almost 7% annually since then to now be around 10% of children needing surgery outside of a Tenotomy.
• Dr Morcuende estimates we have 400-500 trained Ponseti practitioners around the world, but that we need a collective international total of approximately 4,000 providers to meet the 200,000 cases recorded annually
Some of Dr Morcuende’s presentation was quite confronting, but it was delivered with such sensitivity and awareness, that even the parents in the room were able to absorb it. He was passionate about the more thoroughly the practising medical team know the ponseti method, the higher the success rate will be in treatment.
The second speaker was Sheanna Maine from Queensland. She spoke on Epidemiology/Genetics, and QLD health politics (truly!). She was softly spoken and intriguing. Dr Maine answered some long held questions for me. I find I am often asked what causes CF, and that I generally flounder around trying to answer but not really having a clue.
Dr Maine began with some of the statistics many of us CF parents know – 1/1000 live births, twice as likely in boys than girls, and an increased risk in certain cultures such as Polynesian’s, Hawaiian’s and Maori’s (nearly 7/1000 live births).
She expanded on that information with stats around the likelihood of clubfoot babes being associated with other skeletal abnormalities and syndromes (20%) and the likeliness of recurrence when you have a family history of CF – namely parents or sibling. In Caucasean families there is a between 3 – 8% chance of recurrence if one child is affected, and about a 10% chance if a child and parent are affected.
Then she moved on to talk in a lot of big sciencey words that I managed to keep up with at the time, but for the life of me am not able to regurgitate right now. They gyst of it was that research seems to be getting closer and closer to pinpointing a likely genetic link. She spoke about a missing protein, and a single mutation in Chromsone 5 on the PITXI gene. Anyone who knows anything about genetics and science will be reading this and cringing as I am guaranteed to not have articulated this all that well. For me, all that mattered was I feel like I can very confidently respond to that question now with “all research is pointing towards a genetic link but they are yet to completely and definitively pinpoint in”.
We then heard from Dr Ric Angliss, who discussed the “Pathological and functional anatom”y of a CF. He began with all of the characteristics many of us have seen in our very own children – shortened bones, in-turned small feet and atrophic calf’s. I found it fascinating listening to him discuss the importance of “unwinding the deformities in the correct order” (fore foot, mid foot then hind foot – I believe for memory!), and one of the cool statements I heard Dr Angliss say was that “although a clubfoot is displaced and mis-shapen, the joints are usually congruent”. This resonated back to what Dr M described at the beginning about really comprehending the Ponseti Method. He talked about having an appreciation for the complex treatment of the joints, soft tissue and ligaments, and later he stopped by the ACFK tables and used the metaphor of attempting to language how to treat a club foot being like teaching someone to drive without being in a car. He was passionate about needing to get into the plaster room and handle models of feet to really get some understanding around the process.
The third speaker was Peter Coombes from Monesh Fetal Medicine, and he presented on Prenatal Diagnosis. He was called up last minute to present (literally a day or two before conference I think he said) and did a fantastic job. He was incredibly respectful of parents being in the room, and mentioned a number of times about how each and every parent will have their own story on how they found out, and how it was languaged to them. It was brilliant to get some perspective from his point of view on making the diagnosis, and how thorough and careful synographers need to be while they also check for other possible associations. He had images and video’s that he used to show the room what a synographer would be looking for – such as the plane, or angel, of the bones against each other. So for example viewing down the Tibia and Fibula should lead you to an isolated view of the foot, but in clubfoot the foot presents beside the 2 shin bones. For me and I imagine a lot of parents in the room the images looked so familiar, but it was interesting to talk to some of the medical staff later and realise that many of them had never seen an ultrasound image of curly little feet!
Peter advised that a suspected clubfoot would usually not be mentioned in an early scan (12/13 weeks) as it is far too difficult to make a clear diagnosis. He also said that he believes anyone diagnosing clubfoot into the third trimester is “BOLD” in his words. His explanation was that due to limited space at that later stage (and a number of other factors) feet can look to be effected by CTEV, but infact be perfectly straight on delivery. He spoke about the chances of false negative and false positive diagnosis, and the odds of both of them seemed reasonably high – although I haven’t noted the actual figures down to retell. His statistics mentioned that there seemed to be a pretty even split between unilateral and bilateral prenatal diagnosis, but I seem to recall that upon delivery the occurrence of unilateral CF is more likely than bilateral (again, I haven’t noted this down, so I would love to know if anyone else has this information?).
The fourth speaker we heard was Paul Gibbons, who talked about “Classification and variation of presentation”. He began his talk stating that 60 – 80% of clubfoot is idiopathic i.e. the cause is not known, but that after hearing Dr Maine’s presentation he was not as confident with that fact and suspected we are getting much closer to removing the phrase idiopathic from the clubfoot diagnosis (how cool is that!). He went over the scoring systems, and recognised the Dimeglio and Pirani systems as the most common and reliable systems which produce the most consistent results. He quoted a Pirani score of >5 being classified as “very severe”, and that bilateral feet are more likely to be rated more severe than unilateral feet. He also spoke about re-current clubfeet known to be related to the level of compliance with foot abduction brace, i.e. the more closely we can follow the Ponseti method and time requirements of bracing, the less likely recurrence is to happen. He did however also state that 30% of 6 year olds will have had 1 episode of recurrence.
The morning session was completed with a round up of news from some of the major centres – Tony Juarez from Westmead in Sydney, Karen Spangler from Adelaide, Wendy Poulsen from Brisbane, Sharon Vladusic from Royal Children’s in Melbourne, Nicholas Buttiige from Perth and Katie White from Starship Hospital in Auckland (go Kiwi!!).
These guys were really hurried through their presentations as the morning was running over time, but it was very special to recognise some names we hear about on our FB page, and put a face to them. It was also wonderful to get an appreciation for the variety in how different hospitals run their Clubfoot treatment. Some have dedicated clinics, other don’t. Some have special casting stations and rooms, others don’t. General or Local Anaesthetic is used for Tenotomy based on surgeon preference. It was also wonderful to get some insight into the fabulous commitment some of these professionals have put into ensuring they are able to provide the best possible space for our CF families to attend treatment. We even got shown very briefly through a couple of business cases physio’s have been putting together in Perth and Auckland to streamline their clubfoot clinic and gain funding. As Laura Hutton-Storer has shown already with the letter she kindly shared with our FB community, Nicholas from Perth spoke about a 2 month gap in funding, but the clinic now being up and running again. It was clear they had built a wonderful case for continuing with the clinic.
One of the random things I heard a few speakers mention, was that Clubfoot is often referred to as Talipes, which really just means Foot & Ankle. I had to laugh as I often say Talipes, even knowing that that is what it means, so I am going to make an effort to say use better terminology from now on.
This bought the morning session to a close; although I suspect most of us parents would have happily sat through many more hours. I contemplated sneaking back in and hoping no one would notice, or even just hanging out there for the rest of the weekend. Not sure my family would have agreed with me being in Melbourne for an extra couple of days, but I’m sure the remainder of the conference would be fascinating.
Some of the parents mentioned that they had expected to feel a little out of their depth, and for the information to go over our heads (which I also wondered about), but I believe the professionals were very mindful of our presence and it was certainly something we could all follow.
We were hosted for a morning tea with the medical staff, and were able to wonder up and down checking out the other tables there such as Massons, a casting table and others. I was excited to see the little blue and pink Mitchell Boots in the flesh and realise how vibrant they are, and am considering ordering some Double Layered “Black Robin” AFO and boot socks to trial for Zachary.
As the morning tea came to an end the medical staff were ushered back into conference, most of the parents had left. Lauren, Peta and I spent some time tidying up our table and ACFK stock, and catching up with Mish (First Steps) and Tim (Feet First) and hearing about progress on their collaborative project “Boot Bank”.
Lunch break came around quickly, and we were able to spend some more really valuable time with the physio’s and doctors as they wondered past our table. Many of them had heard of ACFK and are already directing their families to our group, but some were excited to learn of us and how we all support one another. There were plenty of brochures and cards given out, and some purchased the Parents Guide we now have available to read through themselves. There was definitely an acknowledgement of how families need both a medical treating team and also a support network while they are at home living this journey. A few people mentioned at lunchtime that Dr Morcuende had spoken very highly of CF parents in the second section of the day, really acknowledging how difficult it can be at times to brace your child at home every night. Isn’t it wonderful to be validated by such an esteemed professional.
We were able to share a cake with the medical’s while they were on lunch break, a small gesture of thanks from ACFK and all our members. It was wonderful to take a moment to acknowledge Lauren and Peta with a beautiful bouquet of flowers from us all, as well as Sharon and Rebecca from RCH who have all worked tirelessly in recent months so we were gifted that small amount of time to absorb the expertise represented at the Ponseti Australasia Conference.
It was also very special to have Dr Morcuende stop by our table and for us girls to be able to have an opportunity to have a photo taken with him. It was awesome to learn over the past few days that Dr Morcuende was already aware of “Leroy’s Boots” book as a patient of his back in Iown had shown him a copy. Our very own Lauren is absolutely fulfilling her mission to spread awareness of clubfoot and our support group.
Unfortunately I had to love and leave the girls, and dash down to catch a cab out to the airport for my flight back to Sydney. I left them with the massive job of tidying up the tables and stock, ooops!
One last thing to share though…as I settled into my seat during take off (1st row, oh yeah) I began flicking through the Parents Guide, when the man next to me says “My daughter had clubfoott, 13 years ago….” Every intention I had of finishing my webinar on the flight home went out the window as I chewed the poor man’s ear off almost the whole way home. Wow, have things changed! It got me thinking about the progress that is just around the corner, and how fascinating it will be to reflect on our own journey’s in another decade or two as more and more advancements are made.
Hope you’ve enjoyed reading my memories of the day. Obviously it is not meant to replace any advice from your treating team who know your child’s foot so well. It is simply an account of my day at conference and an attempt to help those who were not able to be there to get a feel for how it all unfolded. Make sure you all give those precious little feet of yours a little kiss today, in gratitude for coming into our lives and connecting us all.