Alex’s story

alex 1On 7 April, 2003, I stood for the first time in the orthopaedic ward in the at University of Iowa Hospital with my husband Steve 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 faith, hope and love.

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 when I was a child. Doctors think that there is some kind of genetic link, but I never thought that our son would be affected, so it was a complete shock to us.

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 trying to push his feet out a little more each time. Alex hated the manipulations and he seemed to be in discomfort, if not pain.

alex 6

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 a great shock, because I had always believed the casts would do the trick. When treatment started, we were optimistic. His feet were flexible and seemed to us to be moving out well. We hoped that he wouldn’t need the operation. After all it’s easy to fix, right? But then 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’s primarily to stretch the skin and blood vessels in preparation for surgery. He said that in South Africa (in 2003), 90% of all babies with congenital clubfoot were operated on after casting – at between three and six months old.

He said surgery would involve a minimum of three hours per foot, the ligaments and tendons cut and repositioned, pins put in the feet and the baby is in full leg casts for six weeks. After this, there is another anaesthetic so the pins can be removed. 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 doctor was competent, 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. There had to be another way while his little feet still felt so flexible.

I 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 Ignacio 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 for.

alex 2

I was amazed that Dr Ponseti himself was still practising at the University of Iowa Hospital – at 89 years old – I even found his email address and contact number on the website. I immediately emailed Alexander’s pictures to him and phoned him the following day. He asked me how many casts Alexander had so far. When I said eight, his response was in that case, it wasn’t 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?”

We were overwhelmed and excited. We realised we had 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. So 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 support group started by parents whose children had been treated by Dr Ponseti. Parents who had been in the same position 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 war with Iraq was in full swing and the SARS virus had just started to mushroom in the Far East and Canada. But we felt that our baby’s feet were more important.

alex 4

Less than two weeks after making contact with Dr Ponseti, Alexander, Steve, and I 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. With Alexander wrapped up like a little Eskimo baby, we checked into Ronald McDonald House (RMH).

Yes, really! The name seems like a joke to the uninitiated – we had never heard of them in South Africa – but we soon learnt 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 is a warm, comfortable home away from home available to families of children being treated in the Iowa University Hospital. We stayed in a suite, a one bedroom facility with a bathroom and equipped kitchen (there are also hotel-style rooms with bathrooms). 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.

We were addicted to the freshly baked chocolate brownies that miraculously appeared in the kitchen every morning. Local charities bring 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 harder to finance 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, and I knew that Alex would be alright.

alex 7

And so Alexander’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 right up to the groin, to hold the foot in the new position (with the knee bent, to immobilise the lower leg). Alex usually fell asleep during this part! This plaster is left on for five to seven days to allow the ligaments and tendons to stretch to the new position.

alex 5

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.

We were amazed that Alex only needed three casts until he had the tenotomy procedure (done using local anaesthetic), and the final cast. After the first cast was removed, the visible improvement was much more than after 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 casts the full leg, bent at the knee, so that the foot is totally immobilised and stays in the position.

Steve and I were so impressed by the calm professionalism and confidence of Dr Ponseti’s team.

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 the tenotomy, and three weeks later soaked Alex’s casts off in the bath. It was like unwrapping the best present I’ve ever had as his perfect little feet were revealed. A little red and irritated from being in the cast so long, but otherwise perfect.

To hold the correction and prevent relapse, Alex wore a brace when he slept until the age of between two and four years.

alex 9The clubfoot brace is two shoes set at a specific angle, joined to an adjustable aluminium bar. Dr Ponseti told us that if we complied with the brace wear, we were assured that Alex’s feet would not relapse. Apparently in some cases, the same genetic condition that caused the clubfoot can cause it to relapse 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.

We are so grateful that we found out about Dr Ponseti before it was too late. Steve and I feel that this is the very best things we have done in our lives. The long-term benefits for our son are endless. He is assured of painless, fully functional and normal looking feet.

We are very pleased and proud that since our trip to Iowa in April 2003, the Ponseti Method is available to South Africa. Now all parents have the benefit of this wonderful treatment closer to home, without the expense of having to travel outside of the country like we did.

Read more about the poem on the quilt and the story behind it.