Finlay's story

Hi!

We would like to tell our experience so far, with talipes:

Finley is nearly 12 weeks old and is currently undergoing the Ponseti treatment for unilateral talipes on his right foot.

At our 20 week scan, we were informed by the sonographer that it looked as though our baby had a ‘clubfoot’.  I was immediately horrified and had a vision of our baby with a ‘stump’ for a foot with no toes!  Don’t ask me why I thought this – but I will put it down to ignorance of the condition!  We were told that our baby would need an operation, but it would be fine……..  Needless to say, we were still very concerned, so we were booked in for another scan two days later with a senior sonographer who would carry out a thorough assessment.

As you can imagine, we were upset and could not think of anything else until the second scan.  We also looked up clubfoot on the internet, which didn’t really ease our concern and started to read that it could be associated with more serious conditions.

Following the second scan, we felt a bit better.  The scan lasted approx one and a quarter hours, during which the baby’s brain, heart and all other organs and arteries were checked.  The conclusion was that there didn’t appear to be anything else of concern and the sonographer was quite surprised that we didn’t have the condition in our families. 

During the remainder of my pregnancy, my emotions concerning the talipes, were a mixture of highs and lows. My husband and I also made a decision not to refer to the condition as ‘clubfoot’, but as talipes. We told our parents of the condition, but choose not to tell anyone else.  I had fears that my baby had Downs Syndrome, even though my triple test result was 1 in 11,000, and if not, something else was wrong.  It was frustrating knowing that nothing could be done until our baby was born. 

Once baby Finley was born (Thursday 24th May 2007), it was confirmed that he had structural talipes in his right foot and positional talipes in his left.  One of the Physiotherapy Team came to visit us in hospital on the Friday to introduce herself, arrange our appointment and explain what would happen. The following Tuesday (5 days later) we were at Norwich Hospital again for his first assessment and plaster cast.  We were also pleased to hear that they practised the Ponseti method that we had read about.  We then visited the hospital every Tuesday for a new foot ‘position’ and plaster cast.  It took 6 casts for his foot to be corrected; however, we then had to await our consultant’s appointment for the operation to lengthen his tendon, so he was put in a night splint to ‘hold’ the position which he wore all day every day, allowing time for baths and some ‘foot stretches’.  They did explain that his foot would lose some of the position but this would be corrected again with a cast.  Luckily, our appointment was brought forward and the operation booked for Wednesday 18th July 2007.  This went well (despite Finley not feeding for 14 hours prior to the op!) and he was placed in a plaster cast for another three weeks (although this was changed after two weeks and a fresh one was put on to make a final foot position before the ‘boots and bar’.

On Tuesday 7th August, Finley had his ‘boots and bar’ fitted.  He was ‘out of sorts’ and rather distressed for several days, which also interrupted his feeding pattern, but was back to normal on the Friday.

We are hoping that the next three months don’t go too slowly.  We are really pleased with his treatment so far and have a lot of praise for the Physiotherapy Team at Norfolk and Norwich hospital.  We are also surprised at how well Finley coped with the plaster cast and operation.  It was the ‘boots and bar’ that caused him the most distress initially!

Update March 2008

We feel really positive about the whole thing and Finley is not at all worried about his boots and bar.  He is now nine months old and we don't think it will be too long before he will be walking on his own!

Every Pregnancy is Different by Melanie Naisbitt

They say no two pregnancies are the same but as I write this there will be many people going through the same agonies we did.

The 12 week scan was so exciting and confirmed what I didn't dare believe - I was having a baby and there it was wriggling on the screen looking gorgeous even then. The next few weeks were a blur of visiting Mothercare, Boots and reading every magazine on childbirth. That was until we had the Downs test results and decided to have an amniocentesis. It was an awful experience and in retrospect unnecessary as by then I had felt the baby move and I would never have had an abortion.

After getting the all-clear from the amniocentesis and not having a miscarriage, the 20 week scan was going to be great as we would get to see our little baby again. Excitedly lying on the bed and staring lovingly at the screen?. There was silence as the radiographer scanned here, there and everywhere but kept skipping back to various bits?. Still in silence. Our hearts sank when she asked for someone to give her a second opinion - something was wrong. That was when we were told that Max had bi-lateral talipes and dilated kidneys. I was inconsolable; I cried all the way home and all night. Why was this happening to us'; What had I done wrong'; It was such an upsetting time and my partner did not want me to look on the internet to see what it was - like he said, there was nothing we could do until he was born.

Being stubborn I looked anyway but there was too much information for me to take it all in and understand so I buried my head in the sand. We had other traumas during the pregnancy during subsequent scans. Fluid on the brain which meant a MRI scan only to find it was OK. Regardless of the difficult times, I enjoyed my pregnancy and feeling Max wriggling and boxing inside I knew he was going to be a little character.

When he was born we didn't even notice his feet or worry about it - I was more concerned about his dilated kidneys (which have corrected themselves). We just enjoyed finally meeting our "little man" who was 10 days late and induced! For the first two months we were given stretching exercises to manipulate his feet into a normal position. Although they manipulated out easily they reverted back to the club-foot position and we were referred to Birmingham Children's hospital to see the physiotherapists. During my research I had read a little bit about the Ponseti method which seemed to be the best method of correction but when they went through exactly what it involved I was so upset. How could I put my baby through this'; It sounded awful and continuing until he was four was unimaginable - he wasn't even three months old! The appointment was made for the following week so that I could enjoy bathing Max?

The day of the appointment was very nerve-racking as we just didn't know what to expect. I think I cried more than Max did when they were applying the full leg casts.

It was so traumatic for all of us but the next day Max was back to his happy self and was still trying to kick his legs. We did try feeding during the first application but because he cried he choked. He also developed colic because they can't draw their legs up to move the wind and refused to eat for a few days. As it had been so traumatic I put it down to him associating feeding with his feet being putting in casts. After one particularly upsetting day and night of him crying I almost took the casts off. I would have been happy with him never walking properly it was that bad! However, thanks to the steps forum we were told to try treating him for colic and after a week and investing in Dr Browns bottles he settled back down to eating as normal.

Each week is still hard because it is obviously uncomfortable for him to have muscles, tendons, blood vessels, etc stretched but my only advice is to stay calm and try to distract them with a favourite toy or song. Although Max still cries initially with each foot stretch he soon calms down with the distraction. We also give him two 2.5ml doses of Calpol during the day and at night which helps and he gets to sleep with me on those nights which also helps him - obviously not everyone agrees with co-sleeping but I need his cuddles just as much.

We still have a long way to go but when we see progress each week it fills us with hope. Next step is the tenotomy and then boots and bar. Hopefully, he'll continue to be brave. He's certainly braver than us.

Scott


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. The next few days were very difficult as he was clearly in a lot of pain and distress and neither Scott or 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 19 months old, and 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"!

N.B. The views, statements and suggestions published on this web site are those of individuals, as such they are not necessarily corroborated or endorsed by steps. Furthermore, medical information contained within 'your experiences' has not been validated by the steps Medical Panel

On 30th January 1998 we went to have the first scan of our second baby. Sally, was 18 weeks pregnant. We already had a strong, healthy boy, Laurence who was just over a year old.

We had decided to find out the gender of our second baby at the scan, and so this was foremost on our minds as the scan commenced. Then came the news...

After thorough scanning for several minutes, the Sonographer started to explain to us that she was having difficulty imaging his (a boy!) feet. There appeared to be a problem. She talked us through the difficulty she was experiencing and very tactfully and kindly began to explain that he appeared to have bi-lateral talipes - a condition neither of us had heard of. An appointment would be made for us to see a Paediatrician in a few days to talk through the condition.

As the realisation sunk in, tears of shock and disbelief came. Something was wrong with our baby. We went home feeling rather dazed and confused by the whole event.

The next day, by sheer coincidence, Sally happened upon an article in a 'baby' magazine. The article "Baby's First Steps" finished with a list of contact numbers for parents of children with walking difficulties and steps was amongst them. Without hesitation, we wrote off for information on Talipes.

Within 48 hours we received a booklet all about Talipes; what it is; treatment; prognosis? Reading this, we soon realised that this was not a condition with an overnight cure, however, we were encouraged by the fact that, ultimately, it was a treatable condition and that our son would be able to walk and run reasonably well when he grew up.

The Consultant Paediatrician confirmed the diagnosis of bi-lateral Talipes Equino-varus and explained that the exact severity and treatment would not be known until after the baby was born. He also said they had detected a minor kidney disorder (hydranephrosis), fairly common in boy babies. Coupled with the Talipes, however, it was possible that these were symptoms of a more serious syndrome.

A few days later we were at Kings College Hospital for a more detailed scan. After an hour of very thorough investigation and with no stone left unturned we were relieved to hear that, other than the Talipes, he appeared perfectly healthy. After all the worry of something more serious, his feet seemed such a minor problem compared to what could have been.

On July 7th 1998 Gregory Edward was born. A beautiful 7 lb 7 oz boy. All wrapped up in a towel, he was handed to us and we were so enthralled by our new arrival that it was several minutes before either of us remembered "his feet!". We were worried, beforehand, about how we would react but when the time came we agreed that, yes, they were quite bad, but they were his feet and we loved them for that. Knowing about the condition prior to his birth, along with the information we got from steps, was definitely an advantage.

On the ward the following day, we were seen by the Physiotherapist. She showed us how to manipulate his feet in order to gradually stretch the ligaments and skin. The following week he had strapping applied. His treatment had begun. The strapping was removed and re-applied twice a week with us performing the manipulations in between times.

This continued for some weeks until we were seen by Mr Smith, Orthopaedic Consultant at Guy's Hospital who confirmed our suspicions that surgery would be required. Until such time that this could be carried out Gregory would have to have both feet held in a corrective position by leg plasters using a semi-flexible "Soft Cast". The procedure was, that the casts were worn for two weeks, removed by us (not as difficult as one would imagine) and he would have one week without them before returning to Guy's to have them re-applied. Although Gregory had some problems with skin sores, the improvement in the position of his feet was very encouraging. All this was a form of preparatory treatment prior to corrective surgery.



On May 14th 1999 we took Gregory down to theatre at Guy's. Having dreaded this moment it was, somehow, a relief to have finally reached this point. After only an hour we were called to collect him from the recovery room. There he was with both legs in heavy plaster of paris. He made an excellent recovery from the anaesthetic and we were discharged home the following day, encouraged by Mr Smith's comments on the operation's success.

Two weeks later, back at Guy's and under general anaesthetic, the plasters were taken off, his stitches removed and wounds checked before being re-applied. We now are waiting for the day (August 2nd) when the plasters come off and we can see Gregory's "new" feet at last.

June 1999


August 1999
Gregory has now had his casts removed. We are very pleased with the "results" of Mr Smith's handywork or should that be footywork! We know that growing can create its own problems but we now look forward to seeing him walking - which we know will not be very far away!

N.B. The views, statements and suggestions published on this website are those of individuals, as such they are not necessarily corroborated or endorsed by steps. Furthermore, medical information contained
within 'your experiences' has not been validated by the steps Medical Panel.