I ‘met’ the lovely The gorgeous Rebecca over at Busy Bee Mummy Bex last month as she is a fellow Quinny caster. I had a snoop of her social sites (as you do) and I then saw in one of her Instagram photos her youngest child Hugo was wearing boots with a bar attached to them the photo had a hashtag of #talipes – I was so confused so I asked her for the blog post as to what Talipes was and she said she will tag me in the link on twitter.
So she did and my heart completely broke for the story of Hugo’s first few months of life. But also on the other hand was so blessed to gain an insight into something I had never heard of.
What is Talipes?
When we found out that our son Hugo had Bilateral Talipes at a routine scan, the sonographer hadn’t come across the condition very much and explained it as “pigeon foot”. My husband and I looked at him blankly and I immediately burst into tears as my “perfect” baby was no longer perfect. At the same time we were told that Choroid Plexus Cysts had been found on our baby’s brain and this could be a sign of Downs syndrome or something much worse called Edwards Syndrome (where 95% of the time the child doesn’t survive past the age of 3 or 4 if they survived at all). We had to wait an agonising four days for an appointment with a specialist. At the following scan we had five different doctors with us and our consultant immediately put us at ease, had a good look at our baby and said that the Choroid Plexus Cyst had disappeared. There were no other abnormalities apart from his feet but we had no idea how bad they would be until he was born.
We went away from the hospital happy because the worst case scenario wasn’t to be and his Bilateral Talipes was treatable.
I still felt it was unfair that I wasn’t going to have a normal newborn like I did with my daughter. I don’t care what you say but a baby with Talipes isn’t the same as a baby without Talipes. For me having your baby in full leg casts & not being able to bath them or cuddle them, It has taken me a really long time to get my head around.… but I tried to enjoy the rest of my pregnancy and soon became used to the idea of having a baby with Talipes. I was never 100% happy with the idea.
To correct Talipes they now use the Ponseti Method where possible instead of operating. This consists of casts and boots with a bar to keep the feet in place to stop relapse. When Hugo was just five days old he was put into his first set of casts, his feet were scored a 6 (6 is the worst, 0 is a normal foot). He had four weeks of his casts changed weekly, our consultant said it was 50/50 that Hugo would need a Tentonatomy, a small operation where they cut the tendons and then the baby stays in casts for another three weeks.
Amazingly Hugo didn’t need it and even skipped two casts so only ended up needing four casts. He is now in boots and bars for 12 hours a day. Before this he had to wear his Boots & Bar for 23 hours a day for 12 weeks. he was just 6 weeks old, Makes me sad thinking back to it.
When he was in his boots & bar full time It did make day to day life a bit different for him. When he was in his casts he had weekly baths at the hospital and during the week at home he would have a top and tail wash every other day. Now he’s in his boots and bars he needs footless romper suits and dungarees so finding clothing has been difficult; any item with poppers to make nappy changing much easier. I was told he shouldn’t be in any pain but may be in a bit of discomfort and during the first week he was extremely unsettled; not sleeping just crying.
Talipes shouldn’t affect Hugo in any way in the future, he will be able to crawl, He crawled at about 8 months old & mastered crawling whilst wearing his Boots & bar, he should be able to walk fine but at almost 16 months doesn’t seem to be wanting too… He has had a few set backs, His feet actually ‘over corrected’ can you believe that? H we found out Hugo has Hyper mobile legs & hips. So his feet went & has stayed penguin like. we are in the process of trying to fix it now. There is also talk he may need the Tentonatomy.
I’m stronger now than i ever have been. I started a support group called Happy Feet Talipes we have over 300 members now. I don’t know what i would of done without them to be honest.
Life with a Talipes baby is totally different to a normal baby. The issues I have had from… blisters on his feet to his boots rubbing, him escaping, him bashing his sister with his bars.
But I honestly wouldn’t have Hugo any other way. My life as it is now wouldn’t be the same at all.
If you want any other questions ask away 🙂