Louis' Story

Louis was born with Bilateral Congenital Talipes on 19th September 2009.

Louis new born with bilateral congenital talipes

When I went for my 20 week scan at Holles St I was told that the baby has a condition that is called Talipes, or clubfoot, which means the foot is turned inwards. They were unable to say how severe it was and said it is quite common and in many cases it is just a matter of some physiotherapy so don’t worry unnecessarily. We were given the Steps website if we wanted to find out some more information and an appointment was made for me to have another scan at 30 weeks to confirm the condition.

Me and my husband where concerned but not enough to start researching as we wanted to believe that the feet may not be too bad and physiotherapy would fix it. My mother said my brother had a mild case of it when he was born and his feet straightened out by themselves.

At my 30 week scan it was confirmed that the baby does indeed have Talipes on both feet and that it looked quite severe with a 45 degree angle. I asked will physiotherapy be enough and the Doctor said that he did not think so, but that they are unable to tell until baby is born. This worried me and I started my research on the web which was very scary as I suddenly discovered a world of plaster casts, braces, surgery and so on. I cried a lot even though I the scan showed everything else was OK it was still strange that my baby was not perfect... I was very apprehensive of the journey ahead. I wanted to speak to someone that had gone through it but I found no support. My husband then said that we should stop the research and step back from all the scare mongering you can find on the web and wait until the baby was born. That was a good thing to do as I then focussed on the pregnancy and looked forward to becoming a mum again!

Louis was born in Holles St on 19th September 2009.

He was perfect in every way, except that his feet where at a 45 degree angle inwards, but as I knew this would be the case it did not bother me at all! He was my baby boy and he had finally arrived! Sofia (then 3 years) now had a brother!

Louis 6 days old before treatment

I had previously asked my Doctor if any assistance would be needed at his birth and was told that the condition does not warrant any “special treatment” and is a birth like all others. So nothing was said about his feet and the next day when the Paediatrician did his rounds he looked a Louis in same fashion as he checked all babies. I thought he might have spent extra time with Louis but except checking his spine and hips carefully he did not discuss his feet. I asked about what is the next step and he said there are two places that treat Talipes – Crumlin and Temple St. He said both are great. I said I’ll do anything to get the best so who should I see. He said they are all good and that I will be given an appointment to see someone within days at Temple Street Children’s Hospital. The next day as I was leaving an appointment was made with Prof. Stephens at Temple St for the Friday – Louis would be 6 days old....

Treatment Begins....

We met with Prof. Stephens at Temple St when Louis was 6 days old. He said his feet where quite bad and that a series of plaster casts would be needed and most likely the tenotomy (a small operation letting down the Achilles heel tendant). It was a very brief meeting and we then where shown into The Plaster Room where the orthopaedic nurses work and they took over from there. They were just lovely and they explained with a model how the foot looked now and what they were about to do and what they wanted to foot to end up looking. I was full of hormones and cried the whole time – my new born baby in plaster casts!!! They then said that in Temple St they recommend that the baby wears the boots and bar for a year full time (not the 3 months Ponseti usually recommends) and that made me cry even more! It is funny looking back as it all turned out to go so smoothly and without any major discomfort to Louis at all!

We were told to come back to the Ponseti open clinic the next Wednesday. From there on we came back once per week to have his casts re-done.

We had to remove the plaster paris ourselves on the morning of the re-plastering every week. This was very difficult at the beginning and it took us over two hours the first time. But we did some research and in the end we had it down to 20 minutes! Please see how to remove plaster casts at home for details.

Us removing Louis' plaster casts at home

Each time we attended the clinic the orthopaedic nurse wrapped Louis’ foot and leg in cotton wool padding and then a layer of wet plaster. She then firmly pushed and held Louis’ foot in place for 10 seconds until plaster set. This is the only time Louis ever screamed in pain. It only lasts for a few short seconds and I always think of what the result would be if we did not do it. Does not bear to think about so we clinch our teeth and get through it! It usually takes about 10 minutes to do both feet and legs. He is then ready to go and I put on a pair of large socks (3-6 months) and a pair of large jogging pants and he is ready to go. We then go out and make our appointment for next week.

Louis in plaster casts under jogging pants with his sister Sofia

I had read online about issues of blood loss to toes, pressure sores and other discomforts and Louis did not really experience any. He was a bit red (pressure) on one of his feet one week and the nurse dressed it and put the fresh plaster over and by the next week it was gone again. These nurses are experts! The only thing that happened to us was that Louis right cast slipped clean off his leg twice. The first time gave me such a fright as it was in the middle of the night and I was nursing him in a dark room and lifted him up to burp him and felt a heavy thud in my lap. I thought his whole leg had come off for a split second before I realised what had happened! Before he had his tenotomy his foot and leg was so streamlined that it was easy for his leg to jiggle free. Babies don’t exactly lay still. He got very strong tummy muscles throughout his 11 weeks of plaster!

The Tenotomy

Louis had had 8 casts when he was finally ready for his tenotomy (where they make a small incision at the back of the heel to let the Achilles heel down).

We had to take off his casts the night before as it was an early start the day of the operation.

Louis with casts off ready for his tenotomy.

You can clearly see why a tenotomy is necessary

as the foot is streamlined with the leg and not in

an L shape.

I fed him the last time at 4am as he had to fast for 4 hours (breastfed). We were due in at the Day Ward at 8am where we were given a bed to get him undressed and weighed and they took all his details and explained how the day would go. Then it was just a case of waiting as they don’t give you a specific time. We then had to keep Louis entertained as he was not allowed to eat. I had been very worried about this as our daughter had been under general anaesthetic too at this age and she was howling for hours... But Louis did not seem to mind too much and did not say a peep.

Then they came and gave him a gown to put on and they took him away. I cried now, but just a little. Then we went for a coffee and back up to wait for him. He was gone for about an hour and I could hear him crying far away when they brought him back. He was ravenous!!

The operation had gone well and he now had casts on both legs again. We had to wait around for two hours afterwards so they can see that the anaesthetic had wore off fine. In the meantime the Doctor came and said his feet are quite bad so we may look at three or so more casts before boots and bar. Ok we thought, at least the tenotomy hurdle was now over! And home we went.

He did not seem to be in too much pain, but I gave him some suppositories (cut in half – the hospital does not recommend this as it is hard to gauge weight wise, but he threw up Calpol so I had no choice). He was fine and had taken another step in the right direction!

10 days after the Tenotomy we were back in. Usually the casts are kept on for three weeks, but as his feet needed further manipulation they re-did them as soon as the heels had healed. They cut the casts off in the clinic and to see his feet for the 1st time after the Tenotomy was amazing! They looked like “proper” baby feet!

Louis' left foot 10 days after tenotomy

They put on a fresh pair of casts and an appointment was made 10 days from then to see if his feet where ready for boots and bar – which they where! And just in time for Christmas!

Boots and bar

After ten sets of plaster casts when he was 11 weeks he was finally ready for his boots and bar. We were told to remove the final cast at home.

Louis' feet just after plaster taken off. Ready

for "boots & bar". You can still see the arrows

drawn on his legs by the surgeon doing his

tenotomy.

When we arrived the Doctor looked at Louis’ feet and said they were indeed OK for boots and bar now. The Doctor only spent a minute or so with us, then the orthopaedic nurses looked after us again. They had his brand new boots ready! I had previously asked if Temple St supplies Ponseti AFO boots (Mitchell boots) as they seemed more modern and better, but they said that they always start with the Markell FAB and in most cases they are very suitable and cause no problems for the child.

Louis' Markell FAB boots and bar.

So she showed me how to put the boots on and how to secure the bar. Nothing too complicated and we then made an appointment for 6 weeks later. And off we went!

Websites warn you that the first couple of days with boots and bar can be tough as the child is uncomfortable – and they are right! Louis cried a lot and was very sore for about 48 hours after. Imagine, your legs have been fully covered in plaster paris for your whole life and then you are put into leather shoes that don’t move...So it takes the child time to get used to fresh air on the skin, being able to move the knees and being stuck in boots. But it is OK and before you know it you are over the worst and life starts to take on a new routine.

Living with boots and bar

We are allowed to remove his boots and bar for one hour every day. We do it when he wakes in the morning when he is in a great mood. So first thing I take the boots and his socks off and he can kick about and feel the air on the soles of his feet! I also give him a bath, which is a treat as we could not bath him for the first 11 weeks of his life in plaster paris. He loves it!

At the beginning it was hard putting the boots back on as it was sore for Louis so both him and me used to cry! But again, time passes and it did not take many days until he settled and did not mind me putting them back on. Then came the clothing problems – finding pants with poppers. But most shops do babygrows without feet (rompersuits), and GAP (Dundrum shopping centre) do most of their pants etc with poppers. You will also find that most shops do dungarees and they all have poppers too. For sleeping I used to buy ordinary babygrows and just cut the feet off. Not very pretty perhaps, but functional and cheap!

Louis with his "boots & bar"

Daily life with boots and bar is just fine – like any other household. The only thing is that when baby cries (and let’s face it, babies do quite often) you have that added question – is there something wrong with his feet in the boots? Has it slipped, is it rubbing, is it too tight and so on... Louis’ left foot was always on the verge of slipping out of the boot, no matter how tight I tie the boot. It is somehow wriggling outwards all the time so I always check it and it has slipped off many times. It is very annoying when you take him up crying in the middle of the night for a feed and find the foot is out. You then have to put the boot back on, which is tricky enough in daylight when you are wide awake, let alone in the dark fast asleep... But again, you get very good at these things with time! And remember - you are not alone.

First 6 week check up in boots and bar.

Louis had in the last week before the checkup developed a pressure sore on the back of his left heel. So him going in to Temple St for his check up could not have come more timely. He basically had a blister that I covered in compeed (like a second skin plaster you can buy in chemist) but after a week it had not healed as no air can get to it in the boot so the skin breaks down and forms a little hole. The nurses said he will need new, softer, Ponseti AFO Mitchell boots. They will take a week to arrive so they dressed his heel and but on below the knee temporary plaster casts to keep the feet in shape. These where soft and removable and I was to change the heel dressing in a few days time.

Louis in his temporary removable casts

awaiting his new Mitchell boots

It is amazing how fast a baby’s skin heals. It took two days for his heel to look good again but at that stage I was worried his feet where beginning to turn inwards, even with the temporary soft plaster casts. I rang the nurses who said I could put back on the old boots until the new ones arrived. It was OK as his heel had healed and this way his feet stayed in position.

New Ponseti Mitchell boots

I went in to Temple St and got Louis fitted with his new Ponseti AFO Mitchell boots. They are great! Soft, breathable and easy to put on and off with three straps on each foot. The bar also fits on much easier with a clip on and off system. So not only do Louis’ feet seem happier, it is also easier on the parents. I can now let him wear trousers without poppers as I can easily clip off the bar when changing him. I can also fit him into the high chair as the bar clips off.

Louis is his Ponseti AFO boots (Mitchell boots)

However, they still don’t magically fix Louis’ feet as his troublesome left foot has been slipping at least once a day! But it has now become more settled and seems to stay in place better as it is growing. His right foot seems to have grown more, and we have been told that a person with Talipes usually has one foot bigger than the other. No worries, as long has he can walk pain free!

Three months checkup in boots and bar

Louis was in for his three month check-up in boots and bar on March 11th 2010.

Louis waiting in Temple St

I saw this as a bit of a mile stone as in usual Ponseti treatment this is when the boots and bar come off from full time to sleep time only. However, I was aware that Temple St work of a model that keeps them on for about a year. But it still felt like a mile stone.

It was lovely to see the two nurses again as they are so sweet and they said for us to pop in in a week or so again to measure Louis for new boots as his feet are growing. Then we got to see the Doctor. It was not Prof. Stephens this time but the man (can’t remember name) that assist and work alongside him. However, he seemed very competent the 3 minutes he spent with Louis. I suppose it is a good thing that Louis did not warrant any major time, but it feels way too short when they just rush in and out again... He said that Louis heels felt a little soft, but it is common for them to do so at the beginning. He sent us for x-rays to be sure that the bone is growing out into the heel and not up towards the leg. They came back and he showed me on the screen that they are indeed growing correct and that he is happy with the way the feet are progressing! Pfew!!

Louis' feet after three months in boots and bar

(the red marks are pressure marks of the boots)

I was told to keep the boots and bar on for another three months and that they will only consider taking them off full time when the baby starts cruising. So off we went breathing a sigh of relief that all was well so far! Next appointment is when Louis is 9 months in June. However, in the meantime we had made an appointment with a consultant in the UK for a second opinion.

Please follow Louis' progress from here by going to "Louis' story 12" and on from there!