Treating Clubfeet

I was reading a post over at Three Ring Circus today where Tiff was talking about her daughter’s diagnosis and treatment of Pemphigus Foliaceous. (You should go and check out her blog - amazing Aussie Mum of 7) She has posted photos of the treatment progress. It reminded me of a post I have been thinking of writing about Guerita’s treatment for clubfeet. I’ve mentioned it before but never really gave much detail about her journey.

Guerita was born in 2003 with bilateral talipes equinovarus which means that she had 2 clubfeet. It was actually diagnosed during an amniocentesis at 20 weeks; often its quite obvious on the ultrasound. I was having the amnio because my triple test had come back with a higher than normal chance of down syndrome, which turned out to be negative. I was so relieved with that result that the diagnosis of clubfeet didn’t seem so bad.

We were living in Saudi Arabia at the time and planning to have the baby there, but happened to be back in Perth for Christmas when all this testing was happening. We went to see a paediatric orthopaedic surgeon for info about the treatment so we could then compare it to the Saudi treatment and make a decision about where to have the baby. I remember the Perth doctor telling us he didn’t like the name clubfeet because it was not very flattering. He thought the medical term was much better - talipes equinovarus - from the Latin meaning of the ankle (talus) and foot (pes), resembling a horse (equino) and turned inward (varus). I was not very impressed that he was comparing my baby to a horse.

When we returned to Saudi we were satisfied that the paed orthopod would follow the same treatment schedule as they had in Perth so we opted to stay there to have the baby. It was impossible to tell from the ultrasound how severe the problem would be - treatment could range from physio to plaster casts to surgery and we wouldn’t know how bad it was until she was born. We were also told that babies born with clubfeet often also had Congenital Hip Dysplasia (clicky hips), particularly in girls (we didn’t find the sex out beforehand).

Clubfeet is apparently the most common birth defect, occurring in about 1 in 1000 births, and is also very treatable. Even when not treated a person would still be able to walk, just they would be bearing the weight on the top outside of the foot instead of the sole. These are Guerita’s feet a few days after she was born.

Her clubfeet were classed as moderate to severe.

Treatment started before we left the hospital and involved serial plaster casting - the feet were manipulated into a better position and then held there by thigh high casts. Each week the casts were removed, her feet manipulated a bit more, getting them closer to the usual position, before new casts were applied. Guerita did not like this process at all and despite the doctors assuring us it was not painful, I’m sure it was at the very least uncomfortable (and no doubt bewildering) for her to have her feet (gently) forced into a position that was not natural for her. It was difficult to comfort her while the casts were being put on since she had to be held in a certain position. I took to expressing milk and giving her a bottle and the dummy (pacifier) was well used. Nothing worked for very long, but as the weeks went on she got (a little) used to it. She was also confirmed as having a mild case of clicky hips, the only treatment being to wear two nappies to push her hips into a more splayed position and help the formation of the hip sockets.

The most dramatic change in the position of her feet was after one week of casting

Her feet continued to progress well over the next 6 weeks of serial casting

The orange colouring on her legs is the iodine they put on before applying the casts.

We were then due to return home to Perth for a visit so we went back to see the paed orthopod we had seen while I was pregnant. He was very happy with her progress (and the treatment she received in Saudi) so we moved onto the next stage of treatment - Denis Browne boots - lace-up boots attached to a bar. (And we were finally able to give her a full bath!) This meant that her feet were now in the correct position, but there was still a tendency for them to revert, so these boots would hold them in position until that tendency had passed. It was expected she would be having some sort of treatment until she was 18 months old and then regular checkups until she stops growing. The Denis Browne boots were a nightmare because her toes were too pointed and her heels kept slipping out. Clubfeet are generally turned in and up, meaning that the achilles tendon is tight and the tendency is to point the toes. A lot of treatment is aimed at getting full flex in the foot.

We switched to Ankle Foot Orthoses (AFO), a fibreglass splint made from a mould of her feet. No bar between them and a lot easier to manage. They were better than the boots, but her heels would still slip out at times. I was always worried about the position of them and constantly checked the splints. I would make them tighter and tighter trying to make sure her heels stayed down, and then worried about the straps cutting into her little ankles. I was very anxious about the progress of her feet when we returned to Saudi (for a month to pack up and move back to Australia) and when we returned to Perth the doctor confirmed that her achilles was too tight and would need surgical lengthening.

For anyone whose ever had a child undergo surgery they will understand how I felt about that. It was a very simple operation where a Z shaped cut was made in each achilles tendon, then it was stretched out and a stitch put in to hold it in place. Casts were put back on for 10 days and the achilles would regrow at its new length. The operation took place at PMH Children’s Hospital Perth who looked after us so well. They have a tearoom there called the Friendship Room, staffed by volunteers (mostly little old ladies) who serve you tea and biscuits. I was allowed to go with her into the anaesthesia room where they knocked her out. One of the worst experiences of my life seeing my little baby go floppy and handing her over to a nurse. The lovely Friendship Room ladies were waiting outside to take me back to wait, ready with a tissue and a hug which was just what I needed. The 45 minutes of the operation were the longest 45 minutes ever, but once it was all done I was taken to the recovery room to see her. Having been nil by mouth for about 6 hours she was ravenous and probably in pain, but after a big feed she slept for a few hours in my arms in the ward. We went home that night and the next day she woke with a smile on her face - what a trooper!

Back in casts after the op

The operation was a major turning point in her treatment. After the casts came off she went back in AFOs, but this time there were no problems with her heels. She had regular check-ups and gradually reduced the amount of time she had to spend in the AFOs - from 23 hours a day to only at night. She didn’t start walking until 15 months, a little late, but still within the normal range, largely due to being in splints during the day for so long. Around this time the doctor declared her treatment to be complete and we were finally free of splints! We still have regular check-ups with the doc (once a year now) and will do so for years to come, but so far her feet have not reverted at all.

Now, to look at Guerita running, skipping, dancing and climbing, you would never know she had ever had a problem with her feet. The scar from the operation is almost invisible and her feet look like all the other kids’. Other than check-ups we don’t need to do anything different.