The Story of STEPS
Changing lives, one step at a time.
THE STORY BEHIND STEPS
STEPS FOUNDER - KAREN MARA MOSS
A passionate vision, inspired by her son’s experience and meeting Dr Ponseti, drove Karen to revolutionise clubfoot treatment in South Africa. Her intention is that every child born with clubfoot has access to the method that made such an impact on her son’s life.
“On 7 April, 2003, I stood for the first time in the orthopaedic ward in the University of Iowa Children’s Hospital with my husband and our 10 week old baby Alex, reading a poem on a large, framed quilt on the wall. How we all got there is an amazing journey with unexpected gifts of hope that continues to this day.
Alex was a healthy baby, but what hadn’t been picked up in his scans was that he had bilateral congenital clubfoot.
I was familiar with the condition, because my cousin was born with one clubfoot when I was a child.
Although the cause is still unknown, clubfoot can occur more in some families and genetic studies are identifying a hereditary link. I hadn’t even considered by my son could also born with clubfoot, so it was a complete shock to me. The paediatrician and maternity nurses said “don’t worry it’s easy to fix with a few casts”. Alex was fitted with his first plaster casts up to the knee by an orthopaedic surgeon when he was six days old.
At first it was tough for us to get used to, but the casts didn’t seem to bother him. Bathing was a challenge because we couldn’t wet the casts. Once a week we soaked his casts off and they would be redone the next day, the surgeon forcing the front part of his feet out a little more each time. Alex hated the manipulations, I was really upset that it seemed to be hurting him, or at least causing him extreme discomfort.
When Alex was nine weeks old, the orthopaedic surgeon told us we should face the fact that Alex would be scheduled for major surgery on both feet when he was about 12 weeks old. It was hard to accept, because I had always hoped the casts would work. But the early casting progress seemed to reach a dead end with no further improvement.
The surgeon told us that the treatment of clubfoot in South Africa was serial (weekly) casting to try to straighten the foot, but it was primarily to stretch the skin and blood vessels in preparation for surgery. He said that in South Africa (in 2003), around 90% of all babies with congenital clubfoot were operated on after casting – at between three and six months old.
Surgery would involve a minimum of three hours per foot, the ligaments and tendons cut and repositioned, pins put in the feet and then full leg casts for six weeks. After this, there would be another anaesthetic to remove the pins. There was a chance of further surgery when Alex was older, depending on how his feet developed due to scar tissue, etc.
Although we were sure the surgeon was skilled, I was against surgery. I had undergone repeat operations after a car accident. I really didn’t want to subject our baby to pain, a long anaesthetic, possible complications,and recovery time unless it was absolutely necessary.
I also didn’t want to commit to surgery knowing so little about it. We had limited information on clubfoot and the treatment, so I decided to search the internet. I couldn’t believe it when almost immediately, I found a link, “No surgery for clubfoot”, which led me to the University of Iowa Children’s Hospital Ponseti website. It described a non-invasive treatment for clubfeet. Developed over 50 years ago by Dr Ignaçio Ponseti, the method was used successfully in 95% of all cases. After reading all the information, it looked like this could be the ‘miracle’ I was hoping would happen for my son.
I was amazed to discover that Dr Ponseti himself was still practising at the University of Iowa Children’s Hospital – at 89 years old – I even found his email address and contact number on the website. I immediately emailed Alex’s pictures to him and phoned the following day. Even more amazing, Dr Ponseti came on the line himself. He told me he had read my mail and asked me how many casts Alexander had so far. When I said eight, his response was, “In that case, it is not being done correctly.” He said: “I have looked at the pictures of your son’s feet. I can fix them with no problem. You must be here for 20 days, when can you come?”
I felt overwhelmed with nervousness and excitement. We needed to make a quick decision. With the Ponseti method, the sooner you start to stretch babies’ ligaments and tendons while they are still flexible, the better. In the ideal situation Dr Ponseti’s treatment should start when the baby is a week or two old. Alex was already nine weeks old and we were on the other side of the world.
We contacted other top local paediatric orthopaedic surgeons, they confirmed that they would all do clubfoot surgery on Alex, it was the norm and recommended treatment. Dr Ponseti confirmed that he had not trained any doctors from South Africa. We could take him to Uganda, Malawi, or Canada. After some discussion we decided that the best option for our son was to take him directly to the master of the Ponseti Method in Iowa City, USA.
It felt pretty isolated, swimming against the current of local medical opinion. We joined an online Yahoo support group ‘nosurgery4clubfoot’, started by parents whose children had been treated by Dr Ponseti. These parents, who had been in the same position as us and traveled to Iowa for treatment, were a mine of useful information and a huge support while we went through the roller coaster of decision-making.We were preparing to travel halfway across the world with our baby. It wasn’t an ideal time to travel, the US and Iraq were at war, and the SARS virus had just started to spread in Asia and Canada. But these factors felt less daunting than the surgery our baby was facing if we stayed at home.
Ten days after making contact with Dr Ponseti, we started on the first of three flights to cover 10,000 miles to get to him. On 7 April 2003, we arrived from sunny South Africa to an unseasonable snowstorm in Iowa and checked into Ronald McDonald House (RMH). We had never heard of them in South Africa – but we soon learned that Ronald McDonald Charity has many wonderful facilities like this in the USA and worldwide to accommodate families parents of children who need prolonged treatment in hospitals.
The RMH in Iowa City was a warm, comfortable home away from home available to families of children being treated at the hospital. We stayed in a suite, a one bedroom facility with a bathroom and equipped kitchen. They have four communal kitchens to store and prepare food. Two pantries and a fridge are always bursting with donated food. No one goes hungry.
Local charities brought in prepared dinners about four times a week for the residents. We had free use of four laundry rooms, 24 hour internet access, and a shuttle service to the hospital. The friendly staff and volunteers were available 24 hours a day to help with anything we needed.
Unbelievably, all this was available at the incredible price of only $10.00 per room and $15.00 per suite per night. If we hadn’t been able to stay in Ronald McDonald House, it would have been much more difficult for us to pay for the trip and treatment. The total cost of accommodation for our stay of three weeks was under $400.00.
The next morning, we registered Alex at the University of Iowa Children’s Hospital and went through to the orthopaedic ward. As we waited, we read the poem on the quilt made by grateful parents whose children had been treated by Dr Ponseti, and looked at the smiling faces of their babies that were screened onto it. I felt very emotional and greatly relieved. After all the worry and indecision, we were here, about to meet Dr Ponseti. I knew in my heart that Alex would be alright.
And so Alex’s treatment began. Dr Ponseti was an incredibly warm and caring man, quite obviously admired and loved by his staff. He told us he got the most pleasure out of treating clubfoot compared to anything else he did as a surgeon and researcher. This is because it is a simple treatment that gives babies such an improvement to their quality of life. It was very apparent that he adored babies, he didn’t want Alex to cry at all and he would pick him up and comfort him if he got irritable. Alex found him fascinating, staring up at him intently whenever he worked on his feet.
We noted the difference immediately to his previous treatment. It was much more relaxing for us all, and Alex was never in pain. With Alex sitting comfortably on my lap, Dr Ponseti would gently manipulate each foot to reposition the bones.
Then a cast was applied on each leg right up to the groin to hold the foot in the new position and allow the ligaments and tendons to stretch to the new position.. . Alex usually fell asleep during this part. Dr Ponseti told us that he did an accelerated treatment for his out of town patients, so he would remove the casts every five days instead of the usual seven days. Dr Ponseti and his team gave us the exact timing to expect for the treatment and a commitment that it would work. I didn’t feel stressed or worried the whole time we were there. Rather, I looked forward eagerly to each plaster cast because the improvement was so remarkable every time.
After the first cast was removed, the visible improvement was much more than after the eight casts he had had in South Africa. Dr Ponseti told us it is important to know how to manipulate the foot correctly. He demonstrated this on a model of the foot bones and ligaments. He cast the full leg, bent at the knee, so that the foot is totally immobilised and stays in the achieved position.
We were so impressed by the calm professionalism and confidence of Dr Ponseti’s team. The difference to what Alex had at home was huge. I now had a content baby experiencing little discomfort during his casting sessions.
In the short time we were there we met visiting orthopaedic surgeons, one from Mexico who had come to learn the method, and another from Sweden who has been using the Ponseti Method with success for the past twenty years.
We were able to leave the day after Alex had his tenotomy using local anaesthetic, and three weeks later we soaked Alex’s casts off in the bath. It was like unwrapping the best gift I’ve ever received as his perfect little feet were revealed. A little red and irritated from being in the casts so long, but otherwise perfect.
To hold the correction and prevent recurrence, Alex would have to wear a brace when he slept until he was four years old.The clubfoot brace is two shoes set at a specific angle, joined to an adjustable bar. Dr Ponseti told us that if we followed with the brace wear instructions, it would help to keep his feet straight. He said that in many cases, the same genetic condition that caused clubfoot can cause it to recur at a later stage. The risk of this is higher in the early years. Apparently a baby’s foot bones are cartilage and only become fully developed bones by the age of three.
The brace became part of Alex’s daily routine. We didn’t see it as an inconvenience, because it meant that Alex would never require treatment on his feet again. He would have normal looking, normal functioning feet with no scars, stiffness or pain.
I am so grateful that we found out about Dr Ponseti in time. Meeting him was one the highlights of my life. The long-term benefits for Alex are endless. He is assured of painless, fully functional and normal looking feet.
Dr Ponseti has inspired my my work and passion to improve the lives of all children born with clubfoot. I was happy to spend time with him again in 2007 when I attended the clubfoot symposium in Iowa and he checked Alex’s feet. We laughed a lot and he was extremely pleased that his method had reached South Africa. This would be the last time I would see him as he passed away on 18 October 2009 at the age of 95. I miss Dr Ponseti very much, but am proud that I kept my promise to him to take his method to South Africa. Since our trip to Iowa in April 2003, the Ponseti Method is now used in South Africa, Namibia, Botswana, Seychelles and Tanzania, as well as other countries in the region. Now all parents can benefit from having this wonderful treatment closer to home for their child, without the expense of having to travel outside of the country like we did.” – Karen Mara Moss