The Story of Scott's Feet

The first we knew of a problem with Scott's feet was at the 20 week scan. We hadn't expected any problems, and were excited about the scan as we hoped to find out the sex of the baby. The check was very thorough, and things were explained to us at each stage. Then came the comment that they were "having trouble getting a good image of the feet" and that this could indicate a deformity, but one that is normally easily corrected with physiotherapy. However, they would just like to get a second opinion, and this suggested that it was Talipes (although I didn't know what this was, and the word Club Foot was never used). We were referred for further scans, with a higher power scanner, and this confirmed that it was fairly severe Talipes and that it was quite likely that surgery would be necessary. It was then explained to us that this could also be linked to other problems, including a severe and life threatening mental condition, and that we might like to consider an amniocentesis. I decided to have the test there and then, as both Iain and myself felt it best to know what we were dealing with, and hopefully to know that Talipes was all we had to deal with. The results took about a week, but fortunately were fine, and confirmed that we were going to have a little boy.

We were given some information on Talipes including a leaflet from STEPS (the National Association for Children  with Lower Limb Abnormalities) who I contacted immediately and requested their booklet. Also I went onto the Internet and found some good information and case studies which helped us to understand what to expect. After the initial tears, shock and anxiety, within a couple of weeks we had got things into perspective. We realised that there are so many things that "go wrong" - illnesses, abnormalities, and so on - and that we were lucky that this was the only problem.

Scott was born on 3rd December 2000, catching us out by arriving 4 weeks early! At least we could now make plans for the Christmas period! As soon as he popped out, we could see that his Talipes was pretty serious, but we just accepted it, and it didn't effect how we felt about him at all, we both loved him immediately. Scott weighed only 4lb 15oz, and we remained in hospital for a week as Scott didn't seem to know how to breastfeed. We fed him by tube for the first few days until at last he realised what he was supposed to do! A physiotherapist came to visit within a day or two and showed us how to stretch Scott's feet, and we got into the habit of doing a number of stretches at each nappy change. Also we were given an appointment to see the specialist, Mr. Clarke, at his next clinic at Southampton General Hospital.

So at 12 days old, we met Mr. Clarke who confirmed that both feet were as serious and tight as they come, and that they would need surgery at around 8-9 months old. For this reason, he decided that it would not be worth strapping the feet, but  we were to continue doing the physiotherapy. This would be part of our daily routine, and we visited the hospital every week or so for the first few months so that they could assess how they were responding and in fact they were improving, becoming more flexible. Then by June we were told we didn't need to go to the hospital again until we got our appointment for surgery. The timing of the surgery is supposed to allow for the fact that most babies walk at around 12 months old, and as they have to wear plaster casts for 3 months after surgery, the hope is that they will walk soon after removal.  Scott actually had his surgery at 10 months old which worried me at the time, as his casts wouldn't come off until he was 13 months old, but in fact he didn't walk until 18 months old, so maybe surgery would have been better even later!

Scott had two operations in October 2001, two weeks apart. The first was a medial release on both feet which allowed the feet to come round in line with his legs (his ballet dancer pose!). Scott was in hospital for 5 days, and I stayed there the whole time, with Iain staying as late as possible and returning as early as possible each day. The surgery didn't take long - I think they said about 20 minutes a foot, but Scott was away from us for about 3 hours. We collected him afterwards and he was inconsolable, screaming his head off until more morphine was given. Also, surgery hadn't gone as well as expected, as in the corrected position, the circulation to the feet was cut off, with the feet turning blue. Therefore the surgeon had to lessen the correction to allow the blood to flow. The next few days were very difficult as Scott was clearly in a lot of pain and distress and neither Scott nor I got much sleep. I remember thinking that I would give anything to undo what had been done to him, and feeling bad about putting him through it. We had to keep reminding ourselves that in future years, Scott would not thank us if we hadn't got his feet sorted at a young age, and that he wouldn't remember any of it. For whatever reason, Scott was in more pain and discomfort than was expected (in hindsight we could see that this wasn't helped by 4 top teeth all coming through at the same time), but by the fifth day they agreed with us that he would be better off in his home surroundings. So we were released with the instructions to keep him dosed up with Calpol and that we should return if we had any concerns.

After a day at home, Scott gave us his first smile since the operations, and started to get some of his bounce back. We still had to keep him dosed up as once the painkillers wore off, he would become very distressed again. During the day we took him on long walks in the buggy with his legs raised up on a pillow. At night, we had him in bed with us, again with his legs raised on a pillow, or hooked over my own legs. I wondered if it would then be difficult to get him back in his cot without protest, but after a week, when he was much happier and fairly pain free, we got back into his normal routine again (just in time for the second operation!).

The second operation was to release the achilles to bring the foot up so that the sole could now go flat on the floor. The experience was easier for Scott and for us. The operation was easier and would leave Scott less distressed. recovery was quicker, and we were home quicker, getting out the day after the operation. We were a little more relaxed as we had a better idea of what to expect, and this time weren't so worried about anaesthetics and so on. We had a choice of dynacast colour too, so Scott came home with blue legs!

I had been worried about how we would all cope with the plaster casts, but they were never a problem for Scott or for us. They were pretty heavy, but he got used to this within a few days and was waving his legs around in the air when he lay down. He soon learnt to "scoot" around, using his legs to move himself around the room while sitting (a version of bum shuffling). Scott didn't actually crawl until he was 14 months old, after the casts had come off, but I understand that many babies will learn to crawl, or even walk, in their plaster casts! For nappy changes, it was impossible to lift him by his feet, so I would pop my hand under his bottom to lift him up for changes. Clothes were not the problem I expected as many trousers would fit over the casts easily, especially baggy jogging bottom style trousers. Supermarket trolleys were a problem as once in, I couldn't get him out again! Obviously he couldn't have baths for this 3 month period, but it was fine just cleaning him with a flannel or cotton wool. He had one change of plaster which was under general anaesthetic, but we were in and out of hospital on the same day. The time flew by, and then it was January and time for the casts to come off.

We were very excited on the day we went back to Southampton to have the casts removed as we would now find out what Scott's feet looked like. Scott screamed and could not be comforted while the doctor used the little electric saw to cut the casts off. It was a matter of holding him tight and letting them get on with it. When we saw Scott's feet it was great to see them in a more normal position, but I was a little concerned that they were still quite bent where you get the crease on the inside of Talipes feet, and also the right foot didn't look like it would go flat on the floor. However the surgeon didn't seem too concerned and reminded us that the objective is to achieve functional feet, and that they would never look normal. We then saw the orthotist who provided little navy blue Piedro boots, and AFO's (plastic splints with velcro fastenings for night time). He advised us that the feet should only be out of boots or splints for a maximum of an hour a day, so we have got in the routine of putting Scott's boots on first thing in the morning, before breakfast while still in his pyjamas and drinking his milk. Then in the evening we leave the boots on while he is in pyjamas and having milk, teeth cleaning, wind down, etc., and put the splints on just before bedtime. He doesn't seem to be bothered by wearing the boots or the splints which is a relief as we did meet one little boy back in hospital for repeat surgery partly through not keeping his boots or splints on. The only problem really is the physiotherapy. This was much easier in the early days when Scott would be happy lying still while I did the stretches, but now he fights me. I find the best time is while he is eating in the highchair, so I can usually do 3 good sessions 3 times a day, but some days I feel I haven't done such a good job due to him being uncooperative!

So where are we now? Well Scott is walking fairly confidently in his boots, but he has difficulty standing or walking in his bare feet. I guess this will come, but the orthotist advises concentrating on boots and stretching at  this time. Scott's feet are turning in a bit when he  walks, the right more noticably so. The feet look pretty good when you think how they started off, but I feel a bit disappointed that they don't look more normal. They are likely to improve over time as Scott walks  more and more, and we visit the hospital every 8 weeks at the moment so that they can keep an eye on things. We realise that more surgery is a possibility, but I guess it won't be until next year at the earliest if it is needed. The main thing is that Scott is walking, the feet are functional, and he looks like any other toddler in his boots. We'll just take things "step by step"!

For an update on Scott's story, February 2003, click here.

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