Alexander's Story
     
    On 7th 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 Alexander, 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.
click on image so Alex can get a
closer look at you!
 
     
It was the second marriage for us both and we wanted to have a child together, but time was running out with not much happening. Happily, after almost four years I fell pregnant. The pregnancy was difficult from six months, when I developed high blood pressure, which was diagnosed as pre-eclampsia. At 28 weeks, I was admitted to hospital overnight for tests and told by a neonatal nurse that our baby would 'definitely be premature'. Luckily the medication controlled my blood pressure and I had no other symptoms, so we made it to 39 weeks.
     
Alexander was born a beautiful, 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 nine years old. Doctors think that thereis some kind of genetic link, but I never dreamed that our son would be affected.  
Baby Alexander the Good!
     

The paediatrician and nurses all said "don't worry it's easy to fix" and 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.. Alexander hated the manipulations and he seemed to be in discomfort, if not pain.
     
Alex’s first casts (started at 6
days old) – by a non-Ponseti
doctor, so they are only to the
knee, which is not correct
  When treatment started, we were optimistic, because his feet were flexible and seemed to us to be moving out well. We were still hoping that he wouldn't need an operation. After all it's easy to fix, right? But then casting progress seemed to reach a dead end with no further improvement.
     

When Alexander 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 Alex was about 12 weeks old. It was a great shock, because I had always believed that the casts would do the trick.

At the time, the surgeon told us that the treatment of clubfoot in South Africa is 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, 90% of all babies with congential clubfoot are eventually operated on after casting - at between three and six months old.

Surgery would involve a minimum of 3 hours per foot, the ligaments and tendons are cut and repositioned, pins are put in the feet and the baby is put in full leg casts for six weeks. After this, another anaesthetic so the pins can be removed and the feet are straight. But further surgery can be necessary as the child grows and there are the problems of scar tissue, stiffness, immobility, and even arthritis from the teenage year onwards.

Although we were sure that the doctor was competent, I was against surgery. I had had 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. I realised that we had been given very little information on the condition and treatment. I decided to search the internet and couldn't believe it when almost immediately, I found a link "No surgery for clubfoot" which led me to the Ponseti Method website. A non-surgical treatment for clubfeet, developed over 50 years ago by Dr Ignacio Ponseti. It can be used successfully in 95% of all cases. After reading all the information on it, it looked like this could be the 'miracle' I was hoping for.

I were amazed that Dr Ponseti himself was still practising at the University of Iowa Hospital at 89 years old - I even found his email address 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 had so far, when I said 8, 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 had to make a decision quickly. With the Ponseti method, the sooner you start to stretch babies' ligaments while they are still flexible the better. His treatment is usually begun when the baby is a week or two old, but has also been done successfully on babies up to 18 months of age..

After further research and consulting with other top local paediatric orthopaedic surgeons, they confirmed that they would all operate. Ponseti confirmed that he had not yet trained any doctors in South Africa. So we decided that the best option for our son was to take him directly to the Master of the Ponseti Method, Dr Ponseti himself.
 
Naptime for Alex and his cats

 

We were preparing to travel halfway across the world with a 10 week old baby. It wasn't an ideal time for travel, the war against Iraq was in full swing and SARS had just started to mushroom in the Far East and Canada. But we didn't even give that a thought, our baby's feet were more important. We juggled schedules and changed our minds every day about how best to do it.

It felt pretty isolated, swimming against the current of local medical opinion. What helped us immensely was joining a chat group started by parents whose children had been treated by Dr Ponseti. Members from all over the world who had been in the same position were a mine of useful information and a huge support while we went through the rollercoaster of decision-making.

     

Stopover in New York -
Catching the subway with
Daddy
 

Just 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. We left sunny South Africa and arrived to a freezing and unseasonable snowstorm in Iowa. With Alexander wrapped up like a little Eskimo baby, we checked into Ronald McDonald House.

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 that cares for parents of sick children.

 

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 also have four communal kitchens to store and prepare food. No one goes hungry there. Two pantries and a fridge are always bursting with donated food.

 
Eskimo Baby. Alex bundled up in Iowa City, we arrived to an unseasonal snow blizzard!
     
We were addicted to the freshly baked chocolate brownies that miraculously appeared in the kitchen every morning! Also, 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 there is a shuttle service to the hospital. The friendly staff and volunteers were available 24 hours a day to help with anything we needed.
     
Alex and Karen (mom) outside
Ronald MacDonald House, Iowa
City
  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 R3,000.00 ($400.00).
     
The next morning, we registered Alexander at the hospital and went through to the orthopaedic ward. As we waited, I 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 now that Alexander would be all right.
     
And so Alexander's treatment began. Dr Ponseti is an incredibly warm and caring man, quite obviously admired and loved by his staff. He told us he gets the most pleasure out of treating clubfoot compared to anything else he does 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's very apparent that he adores babies, he didn't want Alexander to cry at all and he would  
Alexander and Karen (Mom) with Dr Ponseti
     
pick him up and comfort him if he got irritable. Alexander found him fascinating, staring up at him intently whenever he worked on his feet.
     
The first Ponseti casts are on
  We noted the difference immediately to his previous treatment. It was much more relaxing for us all, and Alexander was never in any pain. With Alexander 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). Alexander 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.
     
We were amazed that Alexander only needed three casts until the tenotomy procedure (done only with local anaesthetic) and the final cast. Already, after the 1st cast was removed, the visible improvement was more than after the 8 casts he had had in South Africa. Dr Ponseti told us it is important to know how to manipulate the foot correctly. He demonstrates 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.  
Wetting casts in the kitchen sink on the morning of the next manipulation and casting)
     
Steve and I were so impressed by the calm professionalism and confidence of Dr Ponseti's team.
     
Alex's feet after three
manipulations and casts
  They gave us exact timing to expect for the treatment and a commitment that it will 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.
     

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 Alexander'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, Alexader will wear a Foot Abduction Brace (FAB) when he sleeps until the age of between 2 and 4 years.

 
Alex (in full leg casts) hits the sales with Daddy
     
Last day of wearing casts -
forever!
  The FAB is two shoes set at a specific angle, joined to an adjustable aluminium bar. Dr Ponseti told us that if we complied with the FAB wear, we were assured that Alexander'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. Apparently a baby's foot bones are cartilage and only become fully developed bones by the age of three.
     
The FAB is now part of Alexander's daily routine. We don't see it as an inconvenience at all, because it means that Alexander will never require treatment on his feet again. He will have normal looking, normal functioning feet with no scars, stiffness or pain. We are so grateful that we found 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 to our son are endless. He is assured of painless, fully functional and normal looking feet.  
Alexander's feet out of the last casts - straight!
     

We are very pleased that since our trip to Iowa in April 2003, the Ponseti Method has come to South Africa. Now many more parents have the benefit of alternative choice of treatment closer to home, without the expense of having to travel outside of the country like we did.

 
Three months later and Alex's
feet are looking great
     
     
POEM ON THE QUILT
 

A Tribute to Dr. Ponseti

You could have done what most men do
When life's been full and night is nigh,
To relish remains of mortal days
Reflecting victory days gone by.

But tapestries are not complete
You knew
Without remaining threads
Of Gold and Silver intertwined
Amidst your sunset's wispy grays.

Not one was worth your time
To be dismissed by idle rocking chairs.
Your loom spun on unnerved by time;
Co-creating hand of God
In healing tenderness.

Those born of us in twilight years
Through pain and sweat of labor love
From caring arms we sent to rest
In yours,
An honored spot of love.

There, childhood dreams were realized;
Fear fell,
Replaced by peaceful hope.
Hearts soared, tears wiped,
Each child set free;
Lives woven in your Tapestry.

     
Background story on the quilt:

The quilt was presented by appreciative "Ponseti baby" parents to Dr and Mrs Ponseti in March 2001. Allyson Egbert, mother of Joshua, who was treated by Dr Ponseti, arranged to have the quilt made and wrote the poem. She used photos of 22 of the Ponseti method babies whose parents had found him through the internet and also a photo of one of the first Ponseti method babies in Uganda.

It was thought that the quilt could be used to wrap around mothers holding their babies while sitting in the Ponseti wooden rocking chair as Dr Ponseti manipulated their babies' feet. They decided to put the quilt up in the waiting room of the section where the children are casted at the University of Iowa Hospital Orthopaedic section.

Martin Egbert, Joshua's father, who has been instrumental in getting the method better known through the internet says: "When Allyson and I first went to Iowa, like many others, we were very nervous, worried, yet hopeful that the Ponseti method was really possible for our son. We sat in that same waiting area wondering what would happen in the next few minutes as our appointment began. I assume that many other parents feel similarly when they are there for their first visit. I think that it is nice that the quilt with all of those children can be there to help greet each new parent and child and help to provide a welcoming comfort for their visit as well."

     
     
Web site author: Karen Moss
 
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