Best foot forward: living with clubfoot
What is clubfoot and how is it treated?
It’s always a shock when you are told that your baby isn’t developing quite as it should be during pregnancy. That’s what happened to me and my husband when we were expecting our first. This is our story.
Our daughter has a condition which requires regular monitoring at a London hospital. Olivia was born with Congenital Talipes Equinovarus (CTE), more commonly referred to as talipes or clubfoot.
What is clubfoot?
Babies born with the condition have feet that turn sideways and inwards rather than adopting a ‘normal’ position.
About one in every 1,000 babies will be born with the condition, which can affect one or both feet. In Olivia’s case, it is both.
We discovered it during pregnancy, at the 20-week scan.
How we discovered our baby had clubfoot.
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.
“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). 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 alone to talk about the amniocentesis and decide if we wanted to go ahead with 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. We had so many things to discuss.
Would we want to take the chance of losing a healthy baby or possibly giving birth prematurely and then watching the child fight for its life?
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.
Preparing for birth.
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.
Olivia 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.
How clubfoot is treated.
Treatment begins as early as possible and involves weekly visits to manipulate her feet into the correct position and put into plaster casts (full leg ones!) to encourage her feet into a normal position.
After a number of weeks a tenotomy is performed, whereby the doctor cuts the Achilles tendon so that it re-grows longer, allowing for the affected foot to drop into a more normal position. The next stage of treatment is the ‘boots and bar’ foot brace, which they wear until they’re about 5-years-old.
Olivia’s treatment began when she was 3 weeks old and she was in the full leg casts for 3 weeks.
The doctors were so pleased with her progress that she moved quickly to the ‘boots and bar’ stage of treatment without needing a tenotomy.
She started wearing the boots and bar for 23 hours a day, but this reduced to night-time only after a while. 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 Olivia, having this condition has never stopped her doing anything – she was still crawling at 7 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.
[box type=”info” align=”aligncenter” class=”” width=”670″]If you have recently been told that your child has clubfoot, or if you would just like more information about what it is, you can visit: