Best foot forward

In a much earlier post back in October 2011, I briefly mentioned that my little girl has a condition which requires regular monitoring at a London hospital.

Now that the chaos of having to post every day for NaBloPoMo (National Blog Posting Month) is behind me - yes, that's right, I've fallen by the wayside already - I've got some time to explain more about Sophia's condition and hopefully raise some awareness at the same time. 

In a nutshell, Sophia was born with Congenital Talipes Equinovarus (CTE).

Image credit

It is more commonly referred to as talipes or clubfoot and around one in every 1,000 babies will be born with it. Babies born with clubfoot have feet that turn sideways and inwards. It can affect one or both feet. In Sophia's case, it was both. 

Rewind back to 2008 and it was during our 20 week scan that we discovered Sophia's condition. 

The idea of our baby having any sort of abnormality didn't enter our minds. My husband and I were so excited at the thought of possibly finding out the sex of the baby that we didn’t really consider the real reason for the 20 week scan – to examine the baby’s development in more detail and look for any signs of ‘abnormalities’.

The scan started off well. The sonographer took measurements of the baby and was making all the right sort of noises. 

However, it wasn't too long before she left the room to get one of her colleagues. She didn't say anything other than she'd be 'back in a minute' and, this being our first baby, we weren't sure whether this was normal behaviour or not. 

She soon returned with her companion in tow. They started examining the baby and murmured to each other. After a short while, one of them left the room and returned with a third sonographer. 

“We think it’s talipes,” I heard one of the sonographers say, “but we’re not sure if it’s in one or both feet.” Up came images of the baby’s feet on the monitor and then cue a lot of pushing and manipulating of my abdomen using the scanner to get a better look of the feet from different angles. 

Eventually, one of the sonographers explained, “It looks like your baby has talipes in both of its feet, although we’re not completely sure about the left one. It’s also called clubfoot and is when the feet curl inwards and upwards at the ankle rather than sit straight out in front.” She demonstrated with her hands. “We’ll refer you to a more specialised centre where they can diagnose it for sure and keep an eye on it.” 

At this point another of the sonographers chirped up and, in what I think was an attempt to cheer me up, said, “Don’t worry, if something’s going to be wrong with your baby, you want it to be this. It can be treated.” 

While it was good to know that my baby’s condition would be treatable, I’d rather there was nothing wrong at all thank you very much. I decided it was best not to answer. 

After that, we were referred to a specialist fetal centre. They confirmed our baby had clubfoot in both feet (called bilateral talipes). But worse was to come. The doctor explained that, because the condition was present in both feet, there was an increased risk of a congenital abnormality like Down's Syndrome. We would need an amniocentesis to know for sure.

My husband and I were left along to discuss it. The procedure brings with it a small chance of miscarriage or, if you leave it until you’re about 25 weeks pregnant, premature birth. But, would we want to take the chance of losing a healthy baby or possibly giving birth prematurely and watching the child fighting for its life? But then what would we do if the baby was disabled? Would we be able to care for our child properly?

We went ahead with the amniocentesis when I was 25 weeks pregnant. The wait for the results was excruciating. It was the start of December when we were told the news and thankfully, we got the all-clear.

It was only then that my husband and I felt we could enjoy the pregnancy properly. It was definitely a significant moment of the pregnancy and we went straight out that weekend, buying all things baby-related. Then, in February, I gave birth to the most beautiful little girl.

I will save my birth story for another time. Needless to say, Sophia arrived into this world healthy, happy and with definite clubfoot in both of her feet. She was referred to the terrific Ponseti team at the Chelsea and Westminster Hospital in London for treatment where she continues to be an outpatient. 

Her treatment started when she was three weeks old. It has involved weekly visits to manipulate her feet and putting her legs into full plaster casts to encourage her feet into a normal position, followed by a tenotomy (where they cut the Achilles tendon so that it re-grows longer, allowing for the affected foot to drop into a more normal position) then it's onto the 'boots and bar' foot brace, which they wear until they're about five-years-old or so.

Sophia was in the full leg casts for three weeks. She hasn't yet needed a tenotomy and we've recently eased off on the use of the foot brace due to a bout of some very bad eczema. She still has regular check-ups at the hospital but the team looking after her are amazed by her progress. I can't praise the team enough for their dedication.

As for Sophia, having this condition has never stopped her doing anything - she was still crawling at seven months, walking just before her first birthday and running around madly as soon as she possibly could. 

She enjoys her twice-yearly trips to the hospital - it is a day out after all - and we are extremely hopeful that her treatment will continue to be successful. 

More information about clubfoot, or talipes, can be found here:

• STEPS charity
• NHS Choices
• Clubfoot.co.uk