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Will’s Story

Scan’s can be one of the most exciting times in a pregnancy, seeing your baby for the first time. It is also one of the most nerve wracking times in your life, as the sonographer checks to see everything is ok with your little one. You watch the reactions of the sonographer closely trying to pick up anything from their reactions.

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You dread the worst, especially when they tell your wife to empty her bladder as they need to check the legs in more detail. Even worse when they switch the machine off, turn round to you and say “I’m so sorry”. This was exactly what happened with us, at my wife Clair’s 20 week scan. At this point, every tiny bit of excitement is replaced by fear and worry. The sonographer tries to explain what they have seen, but you just think the worst.

We were then moved to a room and told that a midwife will come to see us and explain everything. The wait seemed to go on for ever. The midwife explained to us in detail about the situation and what would need to be done and possible treatments after birth.

Our baby was diagnosed with bilateral talipes. Also known as clubfoot, in both feet. At this stage of the pregnancy they could not tell how severe the talipes were and whether it was linked to any other issues. We were given the option of further scans later in the pregnancy to rule out any other conditions.

We were told about support websites, including the great STEPS Charity site. This included lots of information about the condition and treatment,  a forum to talk to parents of babies and children who suffer with similar conditions. In the pregnancy this was a valuable resource and gave us more confidence about what lay ahead. In fact the more we read and talked to other parents, the more we felt the way the sonographer told us was way over the top and could have done this in a much better way.

As the pregnancy went on we had other scans, and although they could not rule out 100%, they didn’t believe it was linked to anything else.

August 31st, 1am and my wife’s contractions start. 7.37am and William was born. His talipes were massively evident to the point that they were classed as severe. After he was born, the nurse came and told us that we would be referred to Nottingham Queens Medical Centre (QMC) Hospital in the Childrens Clinic.

Two weeks after he was born, we took Will to the QMC where he was to be looked after by Mr Hunter. He straight away said that his talipes were severe and that he would need to start his treatment straight away. This was to be approximately 6-8 weeks of being in plaster from his toes all the way up to his hips, to be replaced weekly. A tenotomy followed by another three weeks in plaster. He would then need to be in a special boots and bar 23 and a half hours a day for about three months, which hopefully would be reduced down to nap and sleep times until he is about three or four years of age.

Will was put into plasters at his first appointment and it was heartbreaking to see him lose the movement of his legs and feet. But we knew it had to be done. The first night was awful. He cried virtually all of the night. To the point where we rang the emergency doctor to see if we could give him anything, but he was too young. Unfortunately as the emergency doctor said, we had to just ‘grin and bear it’. It did ease over the next few nights. What we had to try and remember is that as much as it doesn’t look natural to us, he doesn’t know anything different.

What we didn’t think about was what other people would think when we took Will out. You could see people looking at Will’s legs and they’d look at us. We even had people come over to ask us why he wasn’t in plaster. We couldn’t help but think that they thought we’d hurt him or we’d dropped him. It was awful, it was something we had to get used to very quickly and become thick skinned.

Every Tuesday we’d have to return to the QMC to have Will”s feet adjusted and re-plastered. You have to learn very quickly was how to remove the plasters. This had to be done at home about an hour or so before his appointment by soaking them in warm water, loosening the plaster cast and then peeling off the bandages. It wasn’t easy. The first week it took me nearly an hour. Having to keep the water warm enough for Will, and trying not to scare him whilst I was yanking at his feet.

In later weeks, scissors were brought in, being extremely careful, but they were very useful. Over the space of seven plaster changes, I managed to get the plaster removal down to 25 minutes.

The nights were hard, the plasters were obviously weighing Will’s legs down and making it very uncomfortable. The first few nights after a plaster change were the worst, with him being in more pain. We tried lifting his feet with cushions which helped, in the end we went against all advice about baby’s sleeping and he slept on his front. I wouldn’t recommend this, but it worked for us. Remarkably he found this more comfortable and he managed to sleep much better, it was still bad, but we were managing to get better spells of sleep in between his feeds.

Will had seven plaster changes altogether over the space of nine weeks which was then followed by a tenotomy. This was a procedure done under a local anaesthetic where he would have his tendons sliced in both ankles. He’d then be put in plaster for another three weeks. We’d been dreading this operation ever since we knew that Will would have to have it. I couldn’t watch, and got quite emotional during it. But it was very quick and he didn’t feel a thing. Will was also allowed a double dose of Calpol. The worse stages was when the anaesthetic ran out and the Calpol wore off.

Three weeks flew by and it was now the final time to take off the plasters, by now Will’s feet had completely turned to the correct position. In around three to four months Mr Hunter had fixed Will’s feet. It was now a case of keeping them fixed.

It was then time for another visit to the hospital, a visit to the Orthotics department to have his boots and bar fitted and then another checkup with Mr Hunter. He was given white Markell boots, which involved using shoelaces to keep them tight. Mr Hunter was extremely happy with Will’s progress and advised us that he’d need to wear them 23 hours a day. He also advised that the first few nights would be quite hard. How right he was.

All I can remember for the first few weeks was Will constantly waking up crying, Clair and myself regularly checking whether his feet had slipped out of the boots during the night, undoing and tightening them again. It was extremely hard. He didn’t take to them very well. We found the Markell boots very hard to deal with. We spoke to other parents on the STEPS website forum for their experience. We decided to ring the Orthotics department up to see if there were others he could use and advised us that they were trying out a new set of boots and asked us if we wanted to use them. These were blue and had two Velcro straps and a buckle. These were brilliant. They were so easy to put on and keep on. I believe they were made by a company called Reid and we would really recommend them.

It didn’t help Will’s sleep but did ease managing his boots better and he rarely escaped the boots. Another good tip was to pad the rungs of the cot, as they got a bashing with the plaster casts and  now his boots and bar.

It was around this time that we decided to try and claim for Disability Living Allowance for Will. We thought we had a good case with the amount of times we were having to get up to help him at night, and his basic needs outweighed the needs of a child that didn’t have Talipes. It took me over a week to fill in the 50+ page form, I completed a diary of how many times we got up at night and for how long for, and sent lots of literature I’d received from STEPS. I was quite sceptical whether we would be awarded the DLA due to many people being turned down on the Steps website forum, but were overjoyed when two weeks later we received a letter saying we’d been awarded the highest care component. I would recommend any parent of a child with talipes attempting to claim for the equivalent.

Will was to wear his boots and bar 23 hours a day for three months. An extremely long three months, and it was awful seeing him so restricted. He was getting to the age where he was sitting up and trying to move around. But after two months we were back at the hospital for another checkup.

Mr Hunter again was extremely happy with Will’s progress, that much that after another month of 23 hours a day we could reduce this down to night time and nap times. This was great to give Will a bit of freedom, since two weeks of age until he was seven months old he’d been restricted either with plaster casts or boots and bar and now during the day he was free from all of this.

Night times were still the same, in fact probably slightly worse due to him becoming used to not having to wear his boots and bar for the majority of the day. During the day Will was starting to become more mobile and starting to crawl.

By the middle of April we had another checkup at hospital. Mr Hunter again was very happy with his progress, he thought one of his feet was still a bit tight, but this would sort out by using the boots and bar. He was that happy with his progress, that we didn’t need another appointment for six months.

Will became more and more used to his boots and bar. His night wakening reduced immensely and Clair and myself managed to get spells of sleep throughs. It still is a bit of a shock to your system when he wakes, but we were thankful for improved sleep.

By Christmas 2010, Will started to stand up and it didn’t look like he was in any pain. He became more confident in his standing and shuffling along with the help of the sofa and other objects.

After 17 months Will took his first steps on his own which was an amazing milestone for us. For over a year we had wondered whether he’d be able to walk ok, and now he was. The first year had been a hard but amazing year, seeing our baby’s feet change from having severe talipes to the point where he was walking, times we never thought it would happen.

Will was continuing to wear his boots and bar at nights, and he would do so until he was four. We were having an annual check ups with Mr Hunter, and we’d only need to contact the hospital when he’d outgrown his boots, at that point they would simply send us some new boots through the post and we could change them ourselves easily. To this day I feel we were quite lucky with Will and his boots and bar. He would even help us put them on at night, to his knowledge he probably thought we all wore them, but we never had any problems with him wearing them. I know this is different for some parents. We decided to keep his first and last boots for him to look at when he’s older, as he’ll probably never remember having to wear them.

In March 2013, Mr Hunter gave us the news we were waiting for. He could stop wearing his boots and bar by his fourth birthday. August 2013 and he wore his boots and bar for the final time, the following week, Will started school. To watch him play in the playground, to compete in his first sports day were all very emotional times. You look at him now, and you would never know what he had been through.

In March 2014, Mr Hunter was so happy with Will he decided to discharge him. He felt confident we’d know what to look for in the event of a relapse. Unfortunately though at the end of 2014 Will started to complain about some pains in his right ankle and we returned to see Mr Hunter. Mr Hunter gave us a number of stretches to do, and we would return in three months only to be advised that his right foot had relapsed. Will would now need a tendon transfer and ligament lengthening operation. We would be lying if we said it wasn’t a shock. We were aware that this could happen, but I think we were in the mindset of “it won’t happen to us”. Again we got in touch with STEPS who gave this piece of advice that still sticks with me. That this is just another stage of his ongoing treatment for talipes, and it is. Not all children relapse, but it is common. His operation wouldn’t be until September due to family holidays and I was climbing Kilimanjaro raising for STEPS in the August.

We did a lot of research beforehand, spoke to Will’s school about the operation and how they can support him post operation. We also got in touch with the Red Cross about hiring a wheelchair to help him get around.

September came round and we returned to hospital for his pre-op check up. This would involve a number of tests to check he was in good health, and to also make sure that we would be able to help and support his recovery. We were lucky enough that the hospital managed to order us a wheelchair. This turned out to be a better fit so we returned the other to the Red Cross. The hospital gave Will some books to read so that he understood about anaesthetic, operations and recovery. We had to sign a hospital disclaimer to allow the operation to go ahead and that’s when reality hits you.

On the day of the operation we needed to be in the hospital for around 7.30am. We wouldn’t know whether it would be an morning or afternoon operation until later in the morning. We were visited by various nurses who prepared Will for the operation including putting anaesthetic cream onto his hands. Will was kept occupied by a number of films and a Playstation in the waiting room. He was also visited by the anaesthetist who explained what the procedure would be when he goes to theatre. Will would have an early afternoon operation.

Only one parent would be allowed to go with Will into theatre whilst he’s given anaesthetic. It’s something we were dreading, and in the end I decided to go down to theatre with Will. He was given a book to read to count a number of items, the anaesthetist explained how he would go under, and in a matter of seconds he was asleep. Out of everything Will had been through, this for me was the most upsetting time. I found it extremely difficult.

Will’s operation lasted two hours and we tried to occupy ourselves by having some food, but it’s hard whilst your son is undergoing surgery. He was returned to the ward but was still on a morphine drip and would be overnight. Unfortunately he had to have a cast over his knee which Mr Hunter was hoping he wouldn’t, but he needed it to go over his knee to prevent it from moving. He came around regularly that evening, and was offered tea which unfortunately he brought back up, but managed to eat some dry Coco Pops later. Mr Hunter visited and explained that he was happy with how the operation had gone.

We both stayed overnight with Will, thankfully Grandparents looked after our oldest daughter. Only one bed was allowed per patient which led to a fun nights sleep.

The next day Will was still in a little pain, however he was given the opportunity to choose a colour for his plaster. He went for green. His pain relief was monitored and reduced. Physiotherapists then took Will through walking with a frame. Once his medication was ordered, he was allowed to return home that evening. He had a number of medications to take, including liquid morphine (oromorph), ibuprofen and paracetamol which had to be taken at certain times throughout the day and night.

The first few nights were hard as the pain relief only worked to a certain extent, but the pain started to ease. Will struggled at first to use the frame, but it eventually came second nature. He found it extremely frustrating and upsetting at times, not being able to bend his knee but having a wheelchair to help him get around longer journeys was extremely useful.

Will had a week off school, returning exactly a week after his operation. His school was extremely supportive and we used his wheelchair to get him to school, and he used his frame to get around the school itself.

Will is an avid footballer and plays for Rolls Royce Leisure Junior football team. He found it hard not being part of the team during his recovery, although he was still involved as I was coaching the team at the time. Six weeks after his operation we returned to the hospital for his cast removal and splint fitting. This, at Nottingham QMC Hospital is an all dayer. Having his cast removed early morning, he then went down to Orthotics to have his splints measured. They measure, manufacture and fit them all on the same day. He was given two, one for day wear, and one for night wear. We returned to Orthotics in the afternoon for them to be fitted and then had an appointment with Mr Hunter who advised that his foot was recovering well, and we’d need to return in 3 months with Will needing to wear his splints for 24 hours a day.

Having to wear a splint on one foot then involved us having to buy footwear a size or two bigger for one foot. It was quite hard as they also needed to be wide enough to fit his splint in. It took a few days for Will to get comfortable walking with the splint, but once he felt more confident he was walking quite comfortably and getting around really well. Again, his school was very supportive, which we’d made sure we communicated the full situation with the headteacher.

After 3 months, we returned to Mr Hunter who was again happy with his progress and advised a plan to reduce wearing his splint during the day, and to become more active and start to play football again after another month. Will would then have to wear his night splint for another 3 months, which coincided with another visit to Mr Hunter.

Will has been left with a number of small scars on his right foot and you can visibly see the tendon moved.

During Will’s football matches however we noticed him running with his left foot turning in which we monitored for a few weeks, before organising another appointment with Mr Hunter in June 2016. He examined his left foot and advised that he may need a similar operation on his left foot. We tried to do the stretches but to no avail, it was decided that after Christmas he would need to have another tendon transfer and ligament lengthening operation on his left foot. Although we’d already been through this before, we couldn’t but help feel nervous and worry again.

As with the previous operation we had a pre-op assessment visit and we went in early on Monday January 23rd for his operation. Again, we had visits from nurses who would check he was ok for the operation and a visit from the anaesthetist explaining the procedure. I decided that I would again go with Will to theatre as I didn’t want Clair to experience it. I went with Will, knowing I was going to have to go through what upset me so much last time. However this time Will knew what to expect and I could see he was really nervous, which made this even harder this time. It’s a horrible experience, I won’t say it’s not. It’s extremely hard to have to go through that.

Wills operation was much longer this time, lasting over 3 and a half hours. Instead of bringing him up to the ward, we was rushed down to recovery where he’d awoke in extreme pain. They managed to settle him with more pain relief, but not before feeling absolutely useless because we couldn’t do anything to help him.

It turned out that Will had to have much more extensive work on his ligament lengthening, most likely due to him being older. Unfortunately this extensive work led to post operation difficulties. He was allowed home the following evening, however Will started to suffer muscle spasms sporadically. His pain relief wasn’t helping and he was in absolute agony. We returned to A&E a couple of days after his operation who advised that it was quite normal after an operation to experience spasms and that they would eventually ease. We were also running out of prescribed medications which I then had to visit Doctors and the local Walk In Centre to try and get some more Oromorph. By the Friday evening the spasms hadn’t eased and Will woke up at midnight in agony again. We returned to A&E, and this time we were lucky enough to see one of Mr Hunters colleagues who had helped during Wills operation. We spent the whole night in A&E, but we managed to be prescribed further medications. At this point Will was on Oromorph, Diazepam, Paracetamol and Ibuprofen. The extra Diazepam seemed to help. His spasms started to ease the second week after his operation. Will had to have two weeks off school this time, but he returned the week after and although we had one time where we had to rush in to give him his medicine due to spasms, it got to a point where they eventually disappeared. Because of these problems we returned to Mr Hunter after 4 weeks instead of 6, where he checked him out and reduced his cast from above the knee to below. This helped him as he was now able to bend his knee.

After another 3 weeks we returned for the day visit to have his cast off and have his splints measured and fitted.

3 months later and we are now up to date. Will recently visited Mr Hunter who advised he can reduce wearing his day splint. Unfortunately due to the more extensive operation, Will currently has very little movement in his left foot. This should be resolved with physiotherapy, which he is currently undergoing. His exercises have already started to help and he has started to get more movement in his foot. He has also been given the go ahead to play football again which will help. He has played a couple of games already, both whilst wearing his splint. Slightly nervous, but he’s done exceptionally well so far considering what he went through this time around. He also went Ice Skating for his sisters birthday.

He still has physiotherapy to complete and we return to Mr Hunter in December to see how he’s progressing. As any talipes parent will know, it’s a long journey we take, but for every hard day, there are thousands more heartwarming moments.

I continue to try and fundraise for STEPS, for us they have been invaluable since the 20 week scan all the way through his operations to today. I would also encourage anyone else to try and do so. Having climbed Kilimanjaro and ran the London Marathon, my next challenge is to visit all the 92 English Football League clubs with Will as he’s such a football nut. At the same time hoping to meet fellow clubfoot parents along the way. I hope we get the chance to say “Hello”.

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