Clubfoot
Introduction
If you are reading this page, it is likely that you have recently had a baby who was diagnosed with clubfoot, or possibly a scan during pregnancy has indicated that your unborn child has the condition. If you are anything like me, you had previously heard of the term but didn't really know what it meant. Now, of course, you need to know as much as you can.
When our beautiful daughter was born on 8th March 2011 she entered the world with bilateral clubfeet. After the initial joy of her arrival, my wife and I were quite devastated that we didn't have a perfect baby. That is a natural reaction for all parents.
Since Ellie's birth we have spoken with several doctors and nurses; spoken with friends and relatives (a good friend's daughter was also born with clubfeet back in 1977); read a lot on-line; and watched lots of videos.
As a result we feel a lot better. The condition certainly doesn't mean a life of disability. It is a surprisingly common condition among newborn babies and the success rate for treatment is high. After treatment most kids go on to have perfectly normal lives.
As my friend told me, his daughter went on to be a gymnast and cheerleader as well as doing cartwheels on the lawn behind him as he mowed the grass.
The Term 'Clubfoot'
This is one of those antiquated terms for a medical condition that, as well as sounding terrible, gives a complete false impression of what the condition is. I had heard the term as a result of reading about celebrities, such as the late Dudley Moore, who was born with a clubfoot.
I always thought that a 'clubfoot' was a malformed foot with no toes. The term conjures up an external extremity that looks just like a slab of meat. It's a horrible expression. I read on one Internet forum how a mother had banned this term from being used. I don't particularly like it, but I use it.
It is derived from the fact that the foot isn't straight, but is bent outwards relative to the leg in the same way that the head of a golf club is bent out relative to the shaft.
The medical (Latin) name is Congenital Talipes Equinovarus.
A Description In Layman's Terms
Our little girl's feet and toes looked fine but when she was born her feet weren't straight in relation to her legs. Both feet were turned in - one by about 90 degrees and the other by about 100 degrees.
Everything was present inside the foot but the bones, muscles and tendons hadn't formed properly.
Without Treatment
In some developing countries babies born with this condition do not get treated. As they grow they learn how to walk on the outside of their feet with a strange gait.
This can cause sores and infections. Having such a disability means they are incapable of doing many normal things and they can end up being isolated and ostracized from society.
Finding The Right Doctor
This is a major problem. Ellie was first treated at the hospital where she was born and the normal reaction for most people would be to find a local doctor.
The treatment of clubfoot requires very specialised skills and knowledge. Even experienced pediatric orthopedic doctors may not have the right skills. However, some may believe that even without experience they can provide treatment.
We started off with one doctor and ending up changing to another. I spoke to the parents of a child with clubfoot in northern Thailand whose son was born with clubfoot. They had the same problem with ineffective treatment at their local hospital. In fact, the treatment their son received probably made things worse.
In Thailand there are additional cultural problems that many foreigners won't be familiar with unless they understand Thailand.
The notions of saving and losing face are extremely powerful and for a doctor to admit that he or she doesn't have the right skills constitutes a loss of face.
Effective treatment early on is essential. During the course of Ellie's treatment we met an older child whose feet had not been treated correctly after birth. Consequently there were still problems several years later.
With the Internet these days, it is easy to do a quick search to determine who is the right person to see. In the UK, for example, Dr Irene van der Ploeg seems to be building an excellent reputation for successfully treating clubfoot.
In Thailand the top doctor for treating clubfoot is Dr Amnuay Jirasirikul who actually studied under Dr Ponseti at the University of Iowa.
This is the doctor we changed to, as did the parents who had problems in Chiang Mai. He works in Bangkok at two private hospitals (Bumrungrad and Bangkok) and one public hospital (Ramathibodi).
Unfortunately, there aren't that many doctors specialising in clubfoot. We have met parents who have had to travel a considerable distance to the hospital where Ellie is treated, and I have even read of people travelling from Asia to the United States for treatment.
Dr Amnuay in Bangkok regularly sees patients from Malaysia: Malaysian's Clubfoot Blog
My Reasons For Changing Doctor
Ellie's treatment seemed to start off quite well. Her first set of casts were applied after three days, there were lots of other children with the same problem at the clinic, and the doctor seemed to have the right experience.
We met some older children being treated whose feet looked almost normal after being treated at the hospital.
Right from the start we had problems with the casts slipping. After maybe one day her toes would start to disappear into the casts and we would need to return to get new ones.
This wasted an enormous amount of time and with each set of casts only being on for a short time, they weren't having the desired effect.
After about six months her feet were still not corrected and on every visit to the hospital they told us that no more treatment was necessary.
I took photos of Ellie's feet to send to other doctors for their opinions and they both told me that more treatment was necessary.
Our local hospital started making their own orthopedic shoes to correct the condition, but shoes and braces are only used to prevent a relapse, not to correct the condition.
I had read and been told that a proper foot adduction brace is absolutely essential after the feet have been corrected in order to prevent a relapse.
Relapses and Bracing for Children Treated with the Ponseti Method
Our hospital told us that they couldn't get hold of one. If a piece of equipment is absolutely essential in the treatment for a particular problem, shouldn't the hospital have access to it?
By this stage I had started to lose confidence and after some research on the Internet found Dr Amnuay.
Treatment
Once upon a time the favoured treatment was surgery. However, evidence suggests that this is not a good solution. If you've been researching clubfoot then you will already have read about the Ponseti Method.
Developed by Dr Ignacio Ponseti at the University of Iowa in the 1950's, this non-surgical technique seems to be the most effective long-term solution. It involves manipulation of the foot by trained doctors or nurses to get the foot straighter and then a plaster cast is applied to the leg from toe to groin to maintain the position.
Further manipulation and new casts are fitted every 5-7 days. The results are quite noticeable even after the first or second treatment. Our doctor told us this treatment would be repeated once a week for three months but other places seem to be able to complete the treatment sooner.
It is recommended that treatment begins within the first couple of weeks of birth. The soft bones of a newborn baby respond well to treatment but the treatment can even work with older children.
It is non-surgical but our doctor has told us that after this initial stage of treatment she will need to perform some minor surgery under local anaesthetic to lengthen Ellie's Achilles tendons. After this operation another set of plaster casts are applied and worn for three weeks.
Once all this is completed the child will need to wear shoes joined together with a brace in order to maintain the position of the corrected feet. Failure to do so could result in the feet turning inwards again.
The special shoes are worn 23 hours a day for the first three months and after that at night time and during naps. For how long in total depends on each individual case. I have heard and read anything between 1 to 4 years.
The two pictures here are of a five year-old girl we met at the clinic. She was born with exactly the same condition as Ellie and was treated by the same doctor who is treating Ellie using the same (Ponseti) method.
Her feet look quite normal now apart from some scarring from operations to lengthen the tendons. She walks perfectly normally and can do all the other things that kids do.
She was a really sweet kid who just smiled all the time and it was good for Bpom to meet her because it dispelled any worries she had of Ellie having a permanent problem. We are both very confident that the treatment will be successful and effective.
Statistics
Getting accurate global statistics is always difficult and these figures are only to give a general idea. Some may nor correlate because they are from different unrelated sources.
The condition appears to affect one child for every 750-1000 born. Depending who you believe, there are 350,000 to 500,000 babies born every day. Roughly 50% of cases are bilateral (both feet). Twice as many babies born with the condition are male.
Other statistics indicate 200,000 occurrences of clubfoot each year in developing countries and 4,000 to 5,000 each year in the United States. Whatever the actual statistics are, you can see that the condition isn't rare and that you definitely aren't alone.
If your first child is born with the condition, there is an approximately 3% chance that your second child will also have the condition. It can also be hereditary.
If a child's feet are corrected and subsequently wearing of the correct type of brace is discontinued, these are the statistics for a relapse of the condition: 1st year 90 percent, second year 70-80 percent, third year 30-40 percent, 4th year is 10-15 percent, subsequent years are about 6 percent.
Awareness Before Birth
Apparently, the condition starts to show in the first trimester of pregnancy and should show up on ultrasound scans. My wife had both ultrasound and 4D scans and nothing was said so we had no idea until after Ellie was born.
A father on a video I watched on-line said he and his wife knew before the birth of their child and he thought it was a good thing because they were prepared.
My wife took a different view. She said that if she had known during pregnancy she would only have worried a lot and this wouldn't have been good for the child.
Whether you know or not, there is nothing that can be done while the baby is in the womb. Knowing before the birth can therefore be a good thing or a bad thing depending on the parents' views.
Should You Tell Anyone?
One mother I watched on a video said that she had decided not to tell anyone. She didn't want everyone to be fixated on the problem with her child's feet.
We have told people. If people visit and hold the baby they soon feel her plaster casts and want to know what the problem is.
There is another advantage with telling people.
After telling only about a dozen people, two of my friends told me that one of their children had the same condition. I had no idea. This isn't something people normally talk about unless there is a reason.
When we first knew about Ellie I had never heard of anyone else having the same problem. However, lots of people do and if you are open they will tell you.
Knowing that other people have had problems which were then treated makes you feel a lot better.
Further Complications
I haven't seen a single mention of this on the Internet, but our doctor says that babies born with clubfoot can have hip problems later in life. She told us that the two things are often linked.
Once a clubfoot has been treated it is usually shorter and narrower than a normal foot. In the case of a child having the condition with one foot, it is therefore possible that the child will have slightly different size feet after treatment.
Links
- Clubfoot.co.uk
- NHS Choices
- University of Iowa Children's Hospital
- Mayo Clinic
- Pub Med Health
- Relapsing Clubfoot: Causes, Prevention, and Treatment
- Ponseti International
Ellie's Diary
I will add to this as and when treatment is carried out.
Her feet were looking a lot straighter in the casts but after removal of the casts they turned inwards quite a lot again. At this age her bones are still very soft and malleable.
She cried a lot through the procedure so I guess she was experiencing pain. It's upsetting to see a newborn have to go through all this but it seems to be a case of 'no pain, no gain'. Getting her feet straight will not be a completely painless experience.
However, once the casts were fitted there were no signs that she was in any pain.
When the sales staff saw Ellie's legs in casts most of the wanted to know why. One girl knew already because her seven month old niece was born with the condition in one foot and went through the same procedure.
We've been very open with people about Ellie and I have been amazed at how many people know children who were born with feet like this. It is a far more common condition than I first thought.
We first soaks her legs in a bath to soften the plaster but the scissors I tried to use weren't up to the task. It would have taken me a long time and I believed there was a high chance of harming the baby.
The nurse in the fracture clinic - using the correct equipment - removed both casts very quickly.
There has been a tremendous improvement already. After removal of the casts her feet were still turned in a little, but only a fraction compared to when she was born.
At this rate I would estimate that after another two or three manipulation sessions and new casts her feet will be almost perfectly straight. The challenge then will be to ensure that they remain straight in the coming years.
She is obviously feeling more pain now and in order to stop her wriggling around while the casts are fitted it has become necessary to sedate her. She hates taking the medicine but it has the desired effect and makes her sleep.
She seems to be making good progress.
The problem only appears to be with her feet and ankles so today I asked the doctor why it is necessary to apply plaster casts all the way up to her groin. There are two reasons.
Firstly, a full cast is more secure and the plaster is less likely to slip. Secondly, the doctor said the problem is more than her feet and ankles because the tibia of each leg is slightly rotated. Full casts will help to straighten all the bones that are rotated.
The doctor spends a long time today manipulating her feet. She says that she can now reduce the joints completely. What she will do is over-correct her feet because they always go back once the casts are removed.
In the casts her feet are completely straight now.
The doctor said that correcting the position of the feet isn't too difficult, but the biggest problem is stopping the feet reverting to how they were after the initial correction.
This is why the shoes she will wear later are so important. Also, because the doctor can't be with the child all the time this is why parental care is so important with fixing this condition.
Because of the Thai holiday there were no scheduled appointments today and the doctor had to be called in from her day off. The entire staff have been fantastic.
They all have a genuine affection for children and go to great lengths to see that all the kids in the clinic get the best treatment they are capable of giving.
There was only a noticeable problem with one foot but the doctor replaced both casts. When the casts came off, Ellie's foot were almost straight. There has already been a huge improvement since she was born just over a month ago.
The cut the casts in half and just put the back half of the casts on her legs wrapped in bandages. It is just a temporary fix until she can see the correct doctor.
Bpom and I both feel a bit awkward because we are causing them a lot more work but they keep telling us it isn't a problem. I cannot give enough praise to the doctors and nurses at the hospital.
Also, as her feet have started to become straighter it is easier for the plaster to slip. The reasons why we keep having this problem are good signs but all the visits to the hospital are tiring and inconvenient.
Once again, we have to go in the morning to have the casts removed and then again in the afternoon to have new ones fitted. Other people we have spoken to have been removing the casts themselves but I am still concerned about causing Ellie an injury.
The doctor seems to be very satisfied with the overall progress. She can reduce the joints completely now and she wants to perform the operation to lengthen Ellie's Achilles tendons next week.
She said that it is possible to do this under a local anaesthetic but in Ellie's case she thinks a general anaesthetic will be better because - in her words - Ellie is too powerful.
We met a young girl of four months today who has already had the operation. The keyhole surgery the doctor uses leaves virtually no scar.
The nurses tried cutting the casts in half and just using the rear half secured with elasticated bandages but that idea didn't work either.
The operation to lengthen Ellie's Achilles tendons has been confirmed for this coming Monday and she will now have a few days without having to wear casts. Instead, we will just manipulate her feet at home.
As the photo below shows, her feet are getting straighter all the time.
My biggest concern is the general anaesthetic. The doctor normally performs this operation under a local anaesthetic but Ellie is strong, difficult to control, and wriggles around a lot. The doctor thinks that knocking her out completely will be better.
This operation is normally performed at the age of three months if the child started having treatment straight away after birth. Ellie will be seven weeks old on Tuesday and it is the first time the doctor has done this operation on a child her age.
The doctor visited today, as did the anaesthetist, as did one of Ellie's regular clinic nurses on her day off. I'm not sure that the hospital staff normally make a point of visiting patients on their day off but quite a few have taken a shine to Ellie and make a fuss of her whenever she goes in for manipulation and new casts.
As parents it is really tough for me and Bpom to see what she is going through but it is the only way. Without treatment she wouldn't be able to lead a normal life and that isn't an option.
She is making good progress and everything is ahead of schedule. Compared to how her feet were when she was first born, they are now in almost the correct position.
Some more manipulation and casting will get them right and then the special shoes with braces will prevent them from turning inwards again. It's not easy for us, her, or the medical staff but it's the only way.
The only evidence of her surgery is a tiny mark on each heel. The surgeon used a knife that was only about 2mm wide to perform the keyhole surgery. Under normal circumstances no one will ever notice.
Her feet were already getting straighter and now the lateral position of her feet is a lot better. She has reached this stage in less than two months.
I spoke to one of the doctors today and she told me that Ellie's condition is very mild. Apart from her feet being in the wrong position she didn't have any other problems when she was born. Her muscle tone is excellent - indeed, she has a lot of strength in her legs.
Some children born with clubfeet can have poor muscle tone and other problems which make treatment a lot more difficult.
One theory for Ellie's problem is that Ellie was lazy in the womb and didn't move around enough. During Bpom's pregnancy her stomach was very tight at times and she thinks that maybe it was impossible for Ellie to move. I don't think anyone really knows.
She and a friend removed Ellie's casts this morning. Other parents do this but I don't like to for fear of doing damage to Ellie's legs. Bpom tells me her feet look a lot better.
In the evening new casts are fitted. Bpom says her feet are almost normal. These casts will be worn for two weeks and possibly there will only be one set of casts after this before we go into the special shoe stage.
The doctor told Bpom today that once she is out of casts it is important for us to massage Ellie's feet every day and give her a lot of care otherwise she will need more casts.
Everything continues to progress very well.
We visited the hospital again today. Ellie has outgrown her shoes and they need to be adjusted. She also had more casts fitted today as her feet still aren't quite right. They are just short casts, below her knee, and there is a plastic bar connecting both casts. She is due to wear them for a week.
Some children born with clubfeet have other problems and their muscle tone isn't very strong. Ellie's problem was purely the position of her feet and everything else is fine. She is strong, and at times a little too strong.
Because of the problem we know we will have with casts she will just wear the plastic shoes to keep her feet in place. These will be worn all the time, apart from bath time.
We have also been instructed to massage her feet regularly. Her feet need to be stretched and also bent outwards.
The tendons and other bits in her feet are quite short, thus causing her to clench her toes. We are attempting to stretch and lengthen her feet into the correct position.
Her feet are very soft and flexible and we hope that wearing the shoes plus frequent manipulation will get her feet into the correct shape eventually.
Today she changed her mind. She said that Ellie's feet are soft and soft casts aren't necessary. She simply told us to continue manipulating Ellie's feet and to return in three months time.
She also mentioned that when Ellie was ready to walk she would need a different kind of special shoe. The plastic shoes she wears at night now won't allow her to walk. The other kind will support her feet while allowing her to walk.
They stopped manipulating Ellie's feet and applying casts before her feet had been corrected. I don't know why. Every time I was expecting them to do more they told us that nothing further was necessary.
They couldn't source the correct Ponseti shoes, which I understand are essential, and were attempting to make shoes at the hospital. They were trying to use these shoes to correct the problem, but shoes are only worn after the problem has been corrected to prevent the problem reoccurring.
I was getting frustrated and worried. My brother in Singapore tracked down a doctor there and I sent him some photos. Here is his response: "She still has residual adduction and supination feet deformities. Use of the splints is not the correct method to achieve forefoot correction"
I was about to take Ellie down to Singapore but thought I would first try to find another doctor in Thailand.
I located Dr. Amnuay Jirasirikul in Bangkok. Some further reading described how he studied under Dr Ponseti and is Thailand's leading doctor for the treatment of clubfoot.
I found some very positive comments about him online and contacted him via e-mail. He gave me the phone number of another Englishman living in Thailand whose son was born with the same condition.
I called him and he spoke very positively about Dr Amnuay. The doctor works at a couple of private hospitals in Bangkok, as well as a public one. Today we went to see him at Ramathibodi, the public hospital.
He looked at Ellie's feet and told us that she would need up to three more manipulations and castings. He did the first one today and our next appointment is in three weeks.
He also arranged an X-Ray of Ellie's feet today, the first time this has happened. The heel bone in one foot is pointing down, indicating that the heel cord is too short and needs lengthening.
He thinks he will need to operate but will decide on our next visit. He doesn't seem sure at the moment whether to operate on one or both feet.
Ellie's feet are looking straighter but we still have a way to go.
He measured her feet for the Ponseti shoes and agreed to order these himself so that they are ready immediately after her feet have been corrected.
He told us that if we waited to do this he would have to apply new casts. However, if he could do the operation this Thursday there was no need.
We spent a lot of time at the hospital arranging to have her admitted and then I had to get our flights changed and hotel stay extended as we had planned to return home tomorrow. It was a busy day.
For the last couple of days it has been great for both Ellie and us not to have plaster casts. She really wants to walk now and the casts must make life very difficult for her. Thailand is intensely hot at this time of the year and they must be hot and uncomfortable too.
The casts make it very difficult for us to bathe her properly. We either wipe her down, which she objects to, or wrap the casts up in plastic bags and give her a shower.
She went into the operating theatre at about 9am and was back in the children's ward at about 1pm with another set of new casts. She was in no obvious discomfort but the doctor told us that he wasn't able to lengthen the heel cords as much as he had wanted to.
We don't know yet whether this will be a problem or whether what he has done will be sufficient.
His clinic at this hospital is on a Monday. He wants the casts left on for at least four weeks and so our next appointment is for 28th May. By the time all this has finished she will have been wearing casts almost continuously for three months.
With our local hospital there was a problem every time they applied casts in that the casts worked loose and her toes started to disappear.
This would invariably mean going back to the hospital, waiting hours (sometimes all day), and having new casts.
Not only did that take up lots of time but the healing effect of the casts was diminished because each set of casts was only worn for a short time.
I was quite worried about this happening with the doctor in Bangkok because it would have been a big effort to make an unscheduled trip to the hospital.
Fortunately, there have been no such problems. Dr Amnuay's technique for applying casts is excellent. The casts do not slip. There has been no need to make unscheduled trips to the hospital and the casts have the maximum effect.
We had lots of problems with our local hospital that have been non-existent while seeing Dr Amnuay at Ramathibodi.
Let me mention costs.
Our daughter is a Thai citizen and my wife obtained a card that entitled her to free healthcare. However, she had to specify a hospital. She specified our local hospital, which was free, but of course we had lots of problems.
Taking her to see a doctor in Bangkok meant that I had to start paying. Dr Amnuay works at a couple of private hospitals in Bangkok and one public hospital.
Thailand's private hospitals are quite fancy, you don't have to wait long, and they are geared up to deal with foreigners. However, they are expensive compared to public hospitals in Thailand. The doctors you see are the same, as is the level of treatment.
If you don't speak or read any Thai, negotiating your way around a Thai public hospital can be quite daunting.
My wife is Thai and I can speak and read Thai to a certain extent so it wasn't a problem. The costs are quite low and you pay for things as you go along.
If the doctor wants an X-Ray or blood tests, these items are paid for just before. Our previous visits cost about Bt1,200. The operation today was just over Bt9,000.
I don't know how much it would cost at one of the private hospitals, but quite a lot more.
In seeing a doctor at a Bangkok hospital my biggest expense has been air fares, followed by hotel rooms.
Even so, it is still cheap. Had I decided to go to Singapore the cost would have been considerably more, and I have even heard of people living in Asia who have taken their children to the States for treatment.
The Ponseti treatment was pioneered in the States and the States is probably the best place in the world for treating clubfoot.
We are very fortunate to have a doctor who actually trained under Dr Ponseti at the University of Iowa. Apart for treating children himself, another important role he has is transferring his skills to other doctors in Thailand.
Ellie has had this set on for a total of four weeks and four days and it has seemed like a very long time. They were getting quite beaten up and the smell wasn't good either.
It has been a pain bathing her. She doesn't like being wiped down with a damp cloth and the only way we have been able to shower her is by covering her casts with plastic bags.
Even the straightforward task of changing her nappy (diaper) is trickier with casts and she has urinated in her casts a few times.
It was thus a tremendous relief to have them removed today. I have to say though that she has been very good throughout the entire treatment. It can't be much fun wearing casts almost constantly for three months but she hasn't made any fuss.
She objected strongly to the casts being removed. The noise of the electric plaster cutting tool scared her and after wearing casts for so long it must have felt strange at first not wearing them. She cried a lot.
Doctor Amnuay had ordered the foot abduction brace from the United States and gave us instruction on how to fit it. Ellie cried a lot again when we put it on for the first time.
The brace is a highly impressive piece of engineering and is made by MD Orthopaedics in Iowa. With Dr Ponseti having done his research at the University of Iowa, Iowa seems to be the world headquarters for the treatment of clubfoot.
The brace is seriously well engineered and makes the plastic home-made brace from the local hospital here look like a toy.
In some ways I admire the hospital for trying to make their own equipment to keep costs down but their plastic brace just wasn't up to the job and they should give parents all the possible options. The majority of parents will want the best possible treatment for their child and cost is irrelevant.
The MD Orthopaedics brace has rubber, rather than plastic inserts and these are a lot more comfortable. It has buckles and leather straps instead of velcro, which don't come loose.
The metal brace that connects the two shoes is solid and detachable. It is very convenient but the doctor stressed the importance of its use, saying that some parents thought that just wearing the shoes without the brace was sufficient.
The angle of the shoes can be adjusted and the shoes have been set so that they point outwards by about 70°. This is very important.
The shoes have holes in the back to check that the child's heels are fully seated at the back. If not, then the shoes need to be refitted and the straps buckled tighter.
The whole device has been very well thought out, very well designed, and very well manufactured. Of course, nothing worthwhile having in life comes free. The total cost was just over US$400.
The plastic and velcro brace that Ellie had before was free of charge but ineffective, uncomfortable and came loose all the time because it wasn't strong enough.
We have another appointment in three months. The doctor said that for the first three months the brace should be worn as much as possible.
There was one piece of bad news today. Ellie has always had a tendency to pull her feet inwards. The doctor noticed this today and said that she will possible need an anterior tibial tendon transfer operation. He said that about 10% of clubfoot patients have this additional problem.
With the tendons connected to the wrong part of the feet, whenever she pulls the front of her feet up they go inwards instead.
He said that he does not perform this operation on children younger than four. Hopefully, her feet will continue to improve and she won't need this operation. We will have to wait and see. It looks like quite a big piece of surgery with lots of cutting.
It has also become easier to fit. My wife and I are both getting better at putting it on and also Ellie's feet seem to be changing shape.
She wears it overnight and in the morning we take it off for about 45 minutes while we bathe and wash her. It then goes back on all day, apart from when she has another bath.
This week she took her first unassisted steps. She has been able to walk for a while now if she holds on to something, but this was the first time she walked without any support.
Obviously, the wearing of casts and braces for most of the time since she was born has delayed her walking.
Even while wearing the Ponseti brace she can hobble around if she holds on to something and she is able to crawl quite freely.
We are looking forward to the time when she will only need to wear the brace at nighttime and during daytime naps.
She is walking well now, in fact, she runs everywhere. She wears normal shoes, even though her feet aren't quite right. Her feet are straight now but they have no arches and her ankle bones do not show.
There is still some wrinkly skin from where her feet have changed position, but I'm sure this will disappear in time. Most people don't notice that she has had a problem. If you examine her feet closely - as one person did - you can tell that they aren't quite right.
I am hoping that her feet will become more 'normal' over time. We aren't sure how long she will need to wear the brace for at night. Some articles I've read suggest she may have to wear it until she is four.
She is still on her first brace and it looks as if has a lot more room for growth. It's strong and there have been no problems. MD Orthopaedics make excellent products. We lost one of the rubber pressure saddles while in Bangkok for the hospital visit.
MD Orthopaedics sent a replacement and it arrived quickly. For a small piece of rubber it was quite expensive and I was quite annoyed when I was charged an extra Bt400 for taxes and administration when it arrived. I don't understand why essential medical items are subject to tax.
Next update in February 2013.
He said today that some people with short heel cords can walk satisfactorily, but the lack of dorsiflexion (up and down movement of the foot) can mean that squatting is not possible. He reminded us to continue massaging Ellie's feet, and to ensure that we stretch the feet upwards and outwards. Apart from difficulty with squatting, I'm not sure if this will affect other activities in the future, such as sport. As a keen sportsman in my youth, I want Ellie to actively participate in sport when she gets a bit older.
Ellie's general growth is good, which we are pleased about, however, the doctor also mentioned that the rate of growth of bones can exceed the rate of growth of tendons. If this is the case, it will exacerbate Ellie's short heel cord condition. There are many things we don't know yet about Ellie's future, so we will just have to wait.
In the meantime all we can do is to keep stretching her tendons regularly and ensure that she continues to wear her Ponseti brace at night.
Today at the hospital we met a two-month old boy from provincial Thailand who was born with bilateral clubfeet. We spoke to his mother and heard that their local hospital didn't really know what to do. We remarked that she was very fortunate, or very wise, in transferring the child to Dr Amnuay at such a young age. How did she know about him?
It transpires that one of her relatives was aware of Dr Amnuay and made the recommendation. The family has a house in Bangkok and so it was fairly easy to make hospital visits to the capital.
I was pleased for her because her son is now getting the best treatment available in Thailand for his condition, but only because a relative happened to have some knowledge.
As a result of this web page I have received some e-mails from parents in provincial Thailand who have, or who are going to have, children with clubfeet. A common theme is that the local doctors always believe they can carry out the treatment for clubfoot, even though they don't have the highly specialised skills and knowledge that are required.
I could understand this if there were no alternatives, but there are. There is one very good alternative. In Dr Amnuay, Thailand has one of the world's leading specialists in the treatment of clubfoot who actually studied under Dr Ponseti (when speaking about Dr Ponseti, he always refers to him as 'The Master').
As parents of a clubfoot child, we spent a year at the local hospital and towards the end it was clear that they didn't really know what to do next. These days, fortunately, the Internet is an extremely powerful tool. From some research I was able to ascertain what they should be doing, and I was also able to find the right doctor in Thailand to administer Ellie's treatment.
Despite all of its advantages, most information on the Internet is in English and many rural Thais do not have Internet access, or do not have the appropriate language and IT skills to find information. They rely solely on what their doctors tell them.
With an expert doctor working in Bangkok who has a deep seated desire to help children born with this condition, why on earth aren't other hospitals and doctors in Thailand recommending him?
When I asked our local doctor about getting the correct Ponseti brace, she made a comment that Thais are poor and it is too expensive for them so they won't buy it so she couldn't help us. It is NOT a doctor's duty to make assumptions about patients' financial situation.
Regardless of cost, the parents of the child should be made aware of every option that is available to treat their child and allowed to choose themselves. In the first year of Ellie's treatment, no mention was made whatsoever of Dr Amnuay and if not for the Internet we would still be struggling along at the local hospital.
My wife and I feel strongly about this. One reason for this web page is to let other parents in a similar situation know about our experience and to try to give some advice about what to do.
We have also received a welcome kit from MD Orthopedics consisting of a sample Ponseti brace and some literature about their products. With this kit, my wife intends trying to promote some awareness at the local hospitals so at least medical staff have some knowledge of what is available.
When trying to justify why they couldn't get hold of the correct brace, I actually found the doctor's comments quite insulting. As a parent I want the best possible treatment for my daughter. Money is inconsequential. Even if I didn't have the money to buy the brace, I would borrow it. There is no price that I can put on her health.
It is worse in one foot and indicative that the heel cord is still too short, thus pulling the bone up at the back. Ellie has been through two operations to lengthen her Achilles tendons, but both have been unsuccessful.
On both occasions (the operations were performed by diffent doctors), the doctor said that the tendon still wasn't long enough after the operation. This stubbornness of the heel cords to lengthen is ceratinly making the condition worse.
Dr Amnuay seems quite keen to do more casting and another heel cord lengthening operation, however, we would like to avoid this if at all possible.
In other cases, parents of clubfoot children have been able to stretch the heel cords by doing lots of massage and manipulation on the foot. We come to an agreement with the doctor that we will try this to see if we can improve Ellie's feet.
I bought Ellie new Ponseti shoes, this time with the toe stilt option. They perform the same function as the old shoes at night, but she can also wear them to walk in the day time. As she walks, the raised part of the shoe at the front will stretch her heel cords to try to improve dorsiflexion.
At the same time as buying the shoes, I also bought a device called a Dorsi Ramp. This is a plastic box with a sloping surface that the child stands on. The slope can be set at different angles. It works the same way as the toe stilt shoes. See photos below.
The slope goes up at the front and when the child stands on it, the heel cords stretch. We try to get her to stand on it while brushing her teeth, etc.
Despite our attempts to stretch her tendons, her feet are getting worse. Her heel cords are very tight and when she walks we can see that she doesn't walk in the same way as other children her age.
Dr Amnuay notices the relapse straight away and is keen to take some corrective action. He says that when treating clubfoot the risk of a relapse is always quite high. We know that he is right, but with the situation at home as it is with a new baby in NICU it just isn't the right time at the moment.
We know that our efforts to improve Ellie's feet by massage and manipulation have been futile and that she will need more casts and possibly more operations. Ideally, this should be done now, but we will have to postpone it for a while.
However, once Dr Amnuay sees Ellie we all know that we aren't doing Ellie any favours by continuing to postpone the treatment. I have a different view to my wife and don't believe that pulling a three year-old out of school will damage her education. In many countries she wouldn't even have started school yet.
The doctor's recommendation is to apply three sets of casts and wear each for three weeks. After that she will possibly need another tenotomy to attempt to lengthen the heel cords, even though this has been unsuccessful in the past.
He also talked about the possibility of her needing a tendon transfer on the top of her foot. If she does need to have this done, it won't be until she is at least four.
Today, her foot abduction (the outward movement) was 0° and it was the same for her foot dorsiflexion (the upward movement). He said that he would like to get around 45° by casting before he does another heel lengthening operation.
We feel desperately sorry for Ellie for having to wear casts again, but she doesn't complain at all. She had her first casts when she was three days old and she is quite used to it. Dr Amnuay has also modified the Ponseti method of casting to allow children to walk in their casts.
Dr Ponseti, who devised the method, applied casts with a 90° bend at the knee. The main reason for this was to stop the casts from slipping. However, patients can't walk with this type of cast.
Dr Amnuay sets the knee joint at a much smaller angle. This allows the children to walk and he not experienced any problems with slippage. Ellie can actually walk quite well in the casts. It slows her down and doesn't allow her to go up and down stairs, but apart from that she is fairly mobile.
For example, on our last visit the doctor decided to sedate Ellie to apply the casts. It took several hours before she fell asleep and we had to hang around for a very long time.
On this trip we arrived quite early for Ellie's 1pm appointment. However, as we had travelled by plane to get there we were treated like VIPs. Ellie saw the doctor immediately and had the casts removed. She was then very cooperative with applying new casts and didn't need any sedative.
This was excellent news, but our return flight wasn't until 8:30pm. She was wearing new casts before noon and then we had a long time to wait for the plane. Still, this was better than having problems at the hospital and then missing the flight home.
There was more good news. She now has about 20° abduction (although there still isn't much dorsiflexion) and the doctor says that she may not need another tenotomy. He will decide on the next visit whether he will do the tenotomy or not.
This second set of casts should be worn for three weeks, but the doctor will be away in three weeks' time. Our next appointment is therefore in four weeks. The third set of casts will be applied and I am hoping and praying that another tenotomy will not be required.
The right foot still has a problem. With the left foot, the Calcaneus bone looks to be parallel with the ground. However, with the right foot it is pointing down at the front. The condition has improved slightly since January, but there is still a problem.
The third set of casts in this current course of treatment were fitted today and they will come off in three weeks' time.
The good news was the doctor has decided that another operstion isn't needed at this time. Instead, he made it very clear that the onus is now on us, the parents, to try to prevent another relapse. He told me that we will need to manipulate her feet several times a day and also ensure that she wears her Ponseti brace every night.
At the start of this year when our son was born with pneumonia and was in ICU for three weeks we neglected Ellie's feet for a while. Also, she started to object strongly to wearing her brace at night.
For a long time I have had to wait until she is asleep before putting it on and she will normally wake up in the night, realise the brace is on, and start to kick and scream.
I'm not looking forward to it, but when she is out of casts we will have to start administering some tough love and make her keep the brace on even when she throws a tantrum. She is speaking more and she is no longer a baby, but she is still not old enough yet to realise that if she doesn't comply then she will have a big problem when she gets older. It's a difficult age.
I was also under a misunderstanding about what type of operation the doctor was talking about. I thought that he meant another tenotomy in order to lengthen her Achilles tendons. However, he told me that her tendons are the same length as many kids not affected with clubfoot.
He was actually talking about Tibialis Anterior Tendon Transfer surgery. This surgery is performed if the problem keeps relapsing. The tendon is transferred to a different position on the top of the foot so that pulling the tendon only causes the foot to go up, instead of upwards and inwards. However, he will not perform this operation on children until they are at least four.
Ellie has now been in casts for seven weeks, with another three to go. One of the things that has made this period a lot easier is the doctor's decision to set the knee joint at a reduced angle so that she can walk. She can walk in the casts quite well.
The original Ponseti method states 90 degrees, but of course the child cannot then walk. Not being able to walk for 10 weeks is a big problem and this modified procedure is therefore to be recommended. According to Dr Amnuay, reducing the angle of the knee joint has no adverse affects.
Ellie will be three-and-a-half in a couple of weeks and we've been dealing with the problem since she was born. If your child is born with clubfoot be reassured that it can be treated and cured so that the child grows up to lead a normal life, but beware that it can take a long time.
However, he was at the hospital. He was ill and should have stayed at home, but he looked at his patient list for the day and decided that he had to see Ellie personally. He is a very dedicated doctor.
After removing the casts and looking at Ellie's feet he has decided for the moment that a tendon transfer operation isn't necessary. This was good news and I was very relieved. However, he made it very clear that the onus is on me and my wife to continue to manipulate Ellie's feet several times a day and to make sure that she wears her brace at night.
The next appointment is in January.
I contacted Dr Amnuay to inform him of this. He asked whether there was any redness or swelling. There wasn't and he couldn't understand what the problem might be. Anyway, after a couple of weeks the pain disappeared.
We have now adopted a strict policy about Ellie wearing her brace at night. In the past she objected and would quite often wake up during the night demanding that it be removed. I put it on as soon as she has fallen asleep and she wears it until she wakes up in the morning. Now that she has got to used to wearing it regularly, she doesn't seem to mind too much.
We manipulate her feet every day. I place my thumb in the dimple on the outside of her foot and, using this as a fulcrum point, I stretch her feet outwards and upwards.
Compared to the start of the year, which was after the relapse but before the last course of treatment, her feet seem a lot softer and more flexible.
We really want to try to avoid any further operations and we are hoping that the combination of manipulating her feet and wearing the brace will be successful.
Dr Amnuay can't really make a decision so he just tells us to come back again in six months' time. He also made some other comments.
He told me that when he performed the tenotomy he cut through the heel cord completely. I was under the impression that he limited dorsiflexion was due to short heel cords, but even when they were cut completely dorsiflexion was limited. This surprised me.
The doctor said that before he used the Ponseti method he used to try to treat clubfoot patients surgically. There was a lot of work to be done to improve dorsiflexion and it isn't simply caused by short heel cords.
He also told me that he believes clubfoot is a mild form of arthrogryposis. Arthrogryposis is a severe problem and very difficult to treat.
He has seen hundreds, possibly thousands, of clubfoot sufferers and some patients are more difficult to treat than others. Unfortunately, it seems that Ellie is in the category that is difficult to treat.
By all accounts, the treatment she has received so far should have completely rectified the problem, but it hasn't. Her feet respond stubbornly to treatment and there is a tendency for the problem to relapse.
This isn't what we wanted to hear, but we will just persevere and do the best we can.
Ellie, by the way, leads a perfectly normal life. She runs around and plays like any other child her age and I'm sure that the vast majority of people she meets have no idea at all that she has any kind of a problem.
Because of her schooling we have elected to have it done during the long school end of year break.
Dr Amnuay is an extremely accommodating, helpful and friendly man and will go out of his way to attend to his patients.
Ellie gives a blood sample and then we see the doctor, however, it turns out to be an unusual conversation.
My understanding from the last appointment was that he wanted to perform a heel cut operation, but today he talks about doing a tibialis anterior tendon transfer. The heel cord operation did not require an overnight stay in the hospital, but the tendon transfer operation is more complicated and will involve an overnight stay. Our flights are scheduled for Friday and can't be changed.
If he wants to do the tendon transfer operation I will have to rearrange our plans, book more nights in the hotel and buy new airline tickets. This isn't ideal.
After a lot more discussion we decide mutually not to do anything at this time and the operation on Thursday is cancelled. Really, this whole trip was unnecessary, including Ellie's blood test, but her problem is proving difficult to treat.
I don't have any problem with the doctor, who I have the utmost respect for. Every case of clubfoot is slightly different and in the interests of conservative medicine he doesn't want to do anything that is unnecessary.
Ellie will wear two lots of casts for two weeks each (four weeks total) before the operation to make her feet more flexible. After this he will perform the operation and she will wear casts for a further six weeks.
My wife is concerned about her schooling so we have scheduled this for next year during the school break. We will talk to the doctor about performing the tibialis anterior tendon transfer on both feet in order to get everything out of the way. What will be undesirable is for her to have this done on one foot and for the doctor to then decide to do the other foot later.
With some clubfoot patients the foot isn't straight when it is raised. My understanding of this operation, in layman's terms, is that the tendon is transferred from the first toe over to maybe the third toe. As a result, when the tendon is pulled the foot is raised in a much more balanced way.
My feelings are mixed. After several hospital visits where the doctor was uncertain what to do, we now have a plan and this is good. Ellie has already spent so much of her young life with plaster casts on her legs that I can't bear to think of her in casts for another 10 weeks, but it is unavoidable.
When she was born with the problem the medical consensus was that everything would be fine by the time she was four. That didn't happen and when she has the operation she will be six.
Every case of clubfoot is different and there are varying degrees of severity. I have heard of young babies being totally cured after just three manipulations and castings. They are very fortunate.
Ellie's problem has gone on for six years already and she still isn't cured. My hope is that her operation next year will signal the end of the treatment. There is nothing I would like to do more than write one more entry in this journal saying that Ellie's feet are now fine and this diary of events is now closed. We shall see.
In the past the hospital has telephoned my wife to inform her of any appointment changes. This time they didn't. They said they sent a letter, but it went to our old address.
This is quite annoying because these trips to Bangkok aren't cheap, but there is nothing I can do.
Upon observing Ellie's feet he says that the outward movement (abduction) is better and therefore there is no need to perform the tibialis anterior tendon transfer. However, the dorsiflexion is still very poor and he will need to do another heel cord cut.
Before doing this he wants to soften up her feet, which are very stiff, by casting and today he puts on the first set of casts. They are short - below the knee - and this type of cast is a lot better for both Ellie and her parents.
The next trip to the hospital will be purely for a pre-op chest X-Ray and blood test to make sure that Ellie's health is good enough for general anesthesia.
He will then schedule the operation in June. He says that if the upward movement of the feet (dorsiflexion) isn't sufficient after doing the heel cord cut he can do something else to increase movement. This will require my permission, but I'm not exactly sure what he will do.
I have read that the worst thing a doctor can do for clubfoot is overtreat the problem. Dr Amnuay with all his experience is obviously very aware of this and is being very conservative.
My wife is getting very frustrated because he just wants the problem fixed (as I do), but she doesn't seem to understand it from the doctor's perspective. I can see both sides. I still have a lot of confidence in the doctor and I am trying to manage my wife's expectations.
So far, she has just worn the Ponseti brace at night but has worn ordinary shoes the rest of the time.
I asked the woman who runs the shop if she could recommend a doctor locally who can treat clubfoot. She said to go to Bangkok, which we already do. My wife also spoke to another child at Ellie's school who suffers from clubfoot. She also goes to Bangkok for treatment.
This is exactly what we found when Ellie started treatment at our local hospital over six years ago. The orthopedic doctors in provincial Thailand are competent in treating most problems, but they don't quite have the specialist skills required to treat clubfoot.
This is a general problem in Thailand. Bangkok is massive compared to Thailand's provincial secondary cities and if you want the best skills in Thailand you always need to go to Bangkok.
This will improve in the future, but currently it is still a problem. Every time we visit Dr Amnuay there are young doctors from other hospitals in Bangkok and provincial Thailand there to learn from him. The doctor who was getting experience on Monday will actually come back to one of our local hospitals to work after he finishes with Dr Amnuay.
Normally I am charged Bt420 per leg for the casts. Today, exactly the same type of casts were used and I was charged Bt1,750 per leg. This was quite a shock.
The complication concerned her left leg. After cutting the heel cord and trying to get the maximum amount of dorsiflexion the doctor broke a bone in her foot. This wasn't good, but it actually improved the dorsiflexion.
She has a short (below knee) cast on her right leg and one that extends above the leg on her left leg. Our next appointment is in three weeks' time.
On the next visit I believe that the doctor will be performing another manipulation and cast change, but it will be done in the operating theatre under anaesthetic. He is confident that he will be able to get a few more degrees of dorsiflexion.
Cast changes are normally done in the plaster room with her wide awake, but today it was done in the operating theatre under general anaesthetic. When I asked about the reason for this I was told it was so that the patient doesn't move. Also, I guess that she will still be in quite a lot of pain.
There was no need for her to stay at the hospital overnight and we went home after the cast change.
After inspecting her feet he decided that no more casting was necessary. This was a big relief to all of us as she has been in casts for almost three months.
The dorsiflexion is certainly better and now she can walk with her feet flat on the floor as opposed to walking on tiptoes all the time.
Her feet, especially the left foot, look a bit of an odd shape and inside the heel there is no heel bone protruding as there would be on a normal foot. However, I hope that her feet will resume a more normal shape with time.
We keep reminding her to put her feet down flat when walking as she has a tencency to walk on tiptoes. She can walk, but her gait is slow and awkward at the moment.
I bought a Dorsi Ramp a few years ago (photo below), but Ellie didn't use it much. Dr Amnuay recommended using it as much as possible now after her latest operation. Standing on the ramp will stretch her Achille's tendons and help to maintain the dorsiflexion.
She has quite a lot of diagnostic equipment, including a pressure mat to check which parts of the foot patients are applying pressure to when they stand and walk, and she has the facilities to take moulds and have specially designed shoes made to fit each patient's feet exactly.
The shoes aren't too expensive, but the custom-designed insoles are. We ordered two pairs of shoes.
When my wife spoke to Dr Amnuay about this he had no strong opinion. His view was that it was up to us whether we got orthopedic shoes. I am quite surprised about his relaxed attitude towards this.
To my mind, Ellie's feet are now very soft and pliable and if she walks incorrectly the problem with her feet could easily relapse. It makes sense to me and my wife for her to wear shoes that will give her feet the correct support, thus reducing the risk of a relapse occurring. I can't make out why the doctor is so blasé about this, but having the shoes makes us feel better.
We ordered a pair for school and a pair for outside of a school with one set of interchangeable insoles. If the insoles start to show signs of wear I will another another set. They should be ready next Monday.
Looking at the X-Ray and in particular the position of the heel bone, he says that this movement is not being restricted because of short heel cords. It seems to be a problem with the way the bones in her feet come together.
Today he also showed me photos of a young French girl who is a very similar age to Ellie and has a very similar problem. He has been taking care of her feet since birth and the initial procedures looked very promising. However, like Ellie, she experienced a big regression.
Clubfoot is never the same. Some children only need a minimum of casting and manipulation to correct their feet. Others, like Ellie and the French girl, have much bigger problems.
When she was born we were told by doctors that everything should be fine by the time she is four. It seemed a long time, but now she is seven and we are still having problems.
Dr Amnuay also mentioned that he plans to retire within five years. He has already started to decrease his work commitments. After he stops working for the various hospitals that he now works for he says he will continue treating his clubfoot patients - presumably in his own private clinic.
Bangkok isn't exactly the smallest city in the world, but fortunately I speak and read Thai enough to be able to track down someone in Bangkok with just a phone number. It might have been different for many other foreigners.
The first phone call led me to Sirindhorn Hospital, quite close to Suwarnabhumi airport. I met the man in question, who has a job in the orthopedic department of the hospital. He proceeded to make a mold of Ellie's feet and lower legs from plaster casts inside the hospital using hospital equipment.
When it was time to pay I was expecting to pay at the cahier department in the hospital, but he asked for the money directly. I later found out that although he has a full-time job at the hospital, making braces for patients from elsewhere is purely a sideline and he runs this business privately.
Each brace costs Bt3,500, therefore Bt7,000 for two feet. I paid half and he instructed me to collect them from his home in Nonthaburi when they were ready.
I was expecting the brace to be completed and thought that all he needed to do was to make some final adjustments, however, that wasn't the case. He had finished the plastic moulds, but that was all. He constructed the braces as we waited and when finished I paid him the outstanding Bt3,500.
He lives in a three-storey townhouse and the entire bottom floor has been turned into a workshop. This sideline keeps him very busy and seems to provide quite a good income. The salary from his main full-time job at the hospital only pays Bt18,000 per month, but his private works earns him quite a bit more apparently.
There is a photo of the brace below in the 'Photos' section. I never quite caught his name, but his phone number is +66 (0)86 398 0319.
Initially, I had to push her heels down because her dorsiflexion is poor, but now the back of her feet god down a lot more naturally. I still massage and manipulate her feet every night and her feet appear to be more supple. After a previous relapse her feet were very still and manipulation made no difference.
I think there has been an improvement, but we won't be able to confirm that until early June when she has another appointment to see the doctor.
Photos
I normally photograph everything but what I don't have are any photos of Ellie's feet just after she was born before treatment started. This is strange.
As parents, both my wife and I were shocked and quite devastated after the birth. All we could think about was getting her to a doctor to start treatment. I think that subconsciously I just wanted to erase the memories of Ellie's twisted feet from my mind and that taking photos would not allow me to do this.
This is the only photo we have of Ellie's feet on the day she was born. It was taken with my wife's mobile phone. The quality isn't good but you can get some idea of how deformed her feet were when she entered the world.
We were both very concerned ... to say the least. One foot was turned in by about 90° and the other by about 100°. Apart from her feet, she was a perfectly healthy baby. There is no history of club foot in my, or my wife's, family. No one knows exactly why the problem occurs. We were concerned when my wife became pregnant again with our son, but he had absolutely no problems with his feet.
The other mystery is why this problem wasn't picked up during the pregnancy when my wife went for both ultrasonic and 4G scans. Had we known about the problem before she was born we would have been able to prepare ourselves and also arrange for suitable treatment.
As it was, the problem with her feet at birth gave us both a real shock. We then had to start reading up about this birth defect and begin our search to find a doctor.
Click on photo for a larger image.
Ellie at three days old having the first set of plaster casts fitted. She cried a little but settled down after her Mum fed her.
The first part of the treatment is manipulation of the feet to get them straighter. Casts are then fitted to maintain the position.
The casts are fitted from toe to groin and the knee is set at an angle of about 90 degrees.
Click on photo for a larger image.
These are the second set of casts and already there is a big improvement. At birth one foot was turned at 90 degrees and the other 100 degrees. Already, they are nearly straight.
Click on photo for a larger image.
The nurses are using an electric plaster cutter to remove the casts. One source I read said that this shouldn't be done because it can cause distress to the child. I found at least one story of a child dying after the removal of a cast: Anxiety reaction in children during removal of their plaster cast with a saw
However, it doesn't seem to cause a problem.
Click on photo for a larger image.
Immediately after removal of the casts her feet were a lot straighter but then they started to turn inwards again. Her natural tendency is to pull her feet in. I think this is normal. Her bones are very soft and it will take several years for her bones to harden and her feet to remain straight.
Click on photo for a larger image.
After removing the third set of casts, Ellie's feet were noticeably straighter. In the photo above this one you can see that the angle her feet were to her legs just eight days ago was a lot more pronounced. This is definitely not the case now. It won't be long now until they are straight.
Once the casts are removed she still has a tendency to twist her feet inwards and because her bones are still soft they start to revert to how they were. This is quite normal but it is something that will improve with time.
Her feet don't have much up and down movement which I believe is a result of her Achilles tendons being too short. After three months of manipulation and plaster casts she will have a small operation to lengthen the tendons and this should improve matters.
Click on photo for a larger image.
We continue to see big improvements every week, as shown in this series of photos. Her feet can be manipulated so that they are perfectly straight and they remain straight in the plaster casts. When the casts come off they go back, but each time they go back less.
Her feet still have very little up and down movement but the operation coming later to lengthen her Achilles tendons will improve this.
I think her feet will end up being very small but small, cute feet look better than huge, ugly plates of meat so it's not a problem.
At least her feet will be the same size. We have met a number of children at the clinic who have the condition with one foot and the affected foot is noticeably smaller than the normal foot. Ellie shouldn't have any trouble buying shoes later in life, apart from the fact she may not always be able to get shoes small enough.
Click on photo for a larger image.
Another child at the clinic had a set of the special shoes that are used after the plaster cast and manipulation stage to prevent the feet from turning in again.
I understand that these are worn for 23 hours a day for the first three months or so and after that just when the child is sleeping and napping.
Click on photo for a larger image.
Today there were four newborn babies in the clinic all with clubfeet. One was born an hour or two after Ellie. This condition is far more common than most people probably realise. I had no idea how common it was before our experience with Ellie.
Click on photo for a larger image.
More manipulation today and straighter feet every time.
Click on photo for a larger image.
Ellie had the surgery today to lengthen her Achilles tendons. We waited very anxiously outside the operating theatre for a couple of hours while she had the surgery and more casts fitted.
After the Achilles tendons were lengthened, the plaster casts were set to stretch the tendons and put her feet in a more natural up/down position. These casts will be changed every 1-2 weeks and she will wear then for two months.
With her feet now at more of a natural angle to her leg the casts shouldn't slip, as they were doing before.
Click on photo for a larger image.
The poor kid has had a rotten start to life. She isn't even seven weeks old yet and she has spent as much time at the hospital as she has at home. She's had her legs bent, stretched and put in plaster. Today she had ice gel packs applied to her feet to reduce the swelling and needles stuck in her arm where they gave her a saline drip and also took blood samples.
Click on photo for a larger image.
The doctor who is carrying out Ellie's treatment (and who did the surgery today) came to check up on her in the afternoon. She wasn't all that forthcoming but seems to be satisfied with how the surgery went. She made the comment that it was more difficult today than usual.
She keeps saying that Ellie is very strong. It makes treating her more difficult but I'm sure her strength will also be an advantage.
Click on photo for a larger image.
The big operating theatre at the Prince of Songkla Nakarin hospital in Hat Yai, Songkhla, Thailand.
Click on photo for a larger image.
Ellie's feet just after removal of her casts after the tendon lengthening operation. Her feet and legs are a little red but the position of her feet is better.
We think it will take another two or three casts to get the feet in the right position and then it will just be a case of her wearing the special shoes to maintain the position.
We are both very pleased with the progress so far and amazed how quickly the treatment is working.
Click on photo for a larger image.
Since my last update in April, it all seems to be going horribly wrong at the local hospital. Treatment started early when Ellie was just three days old and seemed to be progressing quite well, but then everything stopped.
It is obvious that Ellie's feet need more correcting but every time we see the doctor she says that no treatment or further casting is required. We know from our research on-line that a professionally made brace is essential, but the hospital refuse to help us get one. They insist on using their own home-made plastic brace, which is ineffective.
Ellie had new plastic shoes fitted today as she had outgrown the old ones. The hospital technician first measures her feet and then cuts out the basic shape from a flat piece of plastic.
The plastic is softened in hot water until it can be manipulated easily. The two shoes are held together using an aluminium brace, which isn't detachable. She wears these at night and during daytime naps.
The plastic is hard at normal temperature and cuts into Ellie's feet therefore causing her discomfort. The brace is secured to her feet with velcro and she can kick it off easily. It's free, but it simply isn't up to the job.
Click on photo for a larger image.
We have now changed hospitals and changed doctors. It was obvious that Ellie needed further corrective treatment to her feet, but every time we went to the local hospital they refused to do anything.
They also wanted us to persevere with the home-made toy brace and refused to assist us in acquiring the correct Ponseti brace. Some research on the Internet made it very clear that it was essential for Ellie to see Dr Amnuay in Bangkok. I would urge all parents of clubfoot children in this region to do the same thing. He is the best clubfoot doctor in Thailand, and possible in the region. He's also a very pleasant, understanding, empathetic and helpful person.
The photo shows Dr Amnuay Jirasirikul fitting plaster casts at Ramathibodi hospital in Bangkok. These are the first set he has fitted, but Ellie has had many casts already at the other hospital.
If your child is born with clubfeet in Thailand, regardless of where you are, I would recommend seeing this doctor in Bangkok.
The condition is quite treatable, but the doctor needs highly specialised skills. Unfortunately, many doctors in provincial Thailand don't have the required skills or experience and won't refer patients to other doctors for fear of 'losing face'. It's unprofessional, but Thai cultural behaviour even affects the medical profession.
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These are the first set of casts after seeing Dr Amnuay. He told us that the knee joint is normally set at 90° but because of Ellie's age he set the angle at about 30° to make it easier for her to get around.
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But straighter feet.
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Dr Amnuay reverted to normal practice for the second set of casts and set the knee joint at about 90°. However, this didn't stop Ellie chasing pigeons at the park.
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After the second set of casts were removed on 23rd April, and before Ellie's operation on 26th April, we actually saw her legs for a few days. We had almost forgotten what they looked like. Her feet are already looking a lot better and the treatment hasn't finished yet.
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Ellie didn't like the nurses taking her temperature and blood pressure. There were lots of tears every time this happened.
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In Thailand, some Buddhist monks do their morning alms round at hospitals and thus give patients and their relatives a chance to make merit. Making merit is a very important part of the Thai belief system.
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Ellie on her way to the operating theatre. The operation, unfortunately, didn't go as well as planned. This was Ellie's second operation to lengthen the heel cords, but Dr Amnuay said that he wasn't able to lengthen them as much as he wanted to. This may cause problems with Ellie's treatment.
Because of this, he made the comment that he may have to perform Tibialis Anterior Tendon Transfer surgery at a later stage. However, he cannot perform this until Ellie is four and we will need to make a decision later whether we believe the surgery is required or not.
Tibialis Anterior Tendon Transfer after Clubfoot Surgery
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The third (and hopefully final) set of casts since we started seeing Dr Amnuay are pink. The doctor set these ones almost straight at the knee joint. She will wear these for four weeks and four days.
Fortunately, she is quite used to having casts on her legs and doesn't complain. She gets around quite well and does almost everything she would do without the casts. However, I would recommend that parents see a doctor who is properly trained in treating clubfoot as soon after the child's birth as possible. It is best to get the casting stage over and done with before the child is very mobile because this will cause least distress to both child and parents. The older a child is, the more the child will object to heavy casts.
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After the feet have been corrected by manipulation and casting, the correct type of brace needs to be worn to prevent a relapse. Without wearing a brace, or by discontinuing use of the brace too soon, a relapse is highly likely.
This is the recommended brace from MD Orthopaedics in Iowa. It is very well made and does what it was designed to do. Our local hospital attempted to make Ellie a brace from plastic and velcro but it was ineffective. See photo above dated 19th April 2011.
The correct brace cost just over US$400. It should last Ellie quite a long time, but I'm not sure yet if I will need to purchase another.
The brace is worn full-time for the first three months, after which the time per day that it is worn is reduced. It is possible that she will have to wear it temporarily until she is four years old.
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The footwell in the Dorsi Ramp can be set an angle of 10°, 15° or 20°. This is achieved by turning the ramp upside down or inserting an additional plastic section.
It slopes up at the front and as the child attempts to remain vertical the incline causes the heel cords to stretch in order to improve dorsiflexion.
Children will get bored quickly just standing on the ramp and so it is best to get them to stand on it while doing an activity, such as playing computer games. We get Ellkie to stand on it while she is brushing her teeth.
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The version of the Ponseti shoe with toe stilts can be chosen if children have limited dorsiflexion. At night time, used in conjunction with the metal bar, the toe stilt shoes perform the same function as regular Ponseti shoes.
During the day time they can be worn for walking without using the bar. The principle is the same as the Dorsi Ramp. The feet are raised at the toe and as the child walks, while remaining vertical, it forces the heel cords to stretch.
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Back in casts again, but these short ones make life a lot easier. The wheelchair isn't strictly necessary because she can walk in the casts, but it is a long walk to the airport boarding gate. She gets tired if she walks a lot and I get tired if I carry her.
Passengers in wheelchairs also get special privileges at the airport, such as being fast tracked through airport security.
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Ellie has new braces. These were made by a guy in Bangkok who has a full-time job at a hospital, but who runs his own business making these. They cost Bt7,000 per pair.
Ellie only wears them at night. They seem fairly comfortable, they are rigid, and after four months of wearing them every night after manipulating her feet, there does seem to be an improvement. Unlike her previous brace, there is no bar. This makes it a lot more comfortable to sleep.
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Visit Thailand
Thailand is an incredibly photogenic country, both for its landscapes and its people. Regardless of whether you enjoy large Asian cities, beaches and islands, or rice fields and mountains, Thailand has something for you and it is a dream destination for photographers.
One of the great things about visiting Thailand is that hotels are plentiful and a lot cheaper than in most other countries. Each link on the right will take you to the relevant page on the Agoda website where you can see photos, read reviews, and book on-line. I use Agoda to book all of my own hotels in Thailand and the Southeast Asia region. Agoda hotel rates are usually always the lowest and I have received good customer service, therefore I am happy to recommend the company to other people. Here is some analysis I did regarding booking hotels in Southeast Asia.
Booking.com used to be more expensive than Agoda, but when I have checked hotel prices recently I have found their rates to be quite competitive. Unlike Agoda, you don't need to pay at the time of booking with Booking.com - you can simply pay at the hotel when you check in. Also, Booking.com show you total prices whereas Agoda show you a price and then add on 17% for tax and service charge.
If you want to compare prices between different on-line travel agents (OTAs) for a specific hotel, you can use a company such as HotelsCombined.
Images of Thailand
Cities
Beaches
Mountains & Hilltribes
Islands
Interesting