When I did a shout out for bloggers who wanted to guest post here at Innocent Charms Chats, Bex of Busy Bee Mummy came forward, it was a blog that I had never read before and this was a great shame, I have spent the past few days catching up on some of Bex older posts and she is a lady after my own heart, building her own Flat Pack Home (watch this space she will be back to share), renewing her vows (which we do on our 10th next year, check out my Pinterest board) as well as talking about her babies, gorgeous little ones they are too.
Her little son Hugo, touched my heart especially, as like my Superstar Grayson Hugo was born a little different from everyone else and very kindly Bex has shared her story with us below, please do take 5 minutes to sit back, read and educate yourself a little.
What is Talipes? Our Story.
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 the child doesn’t survive past the age of 3 or 4 if they survived at all). We had to wait an agonising few days for an appointment with a specialist. At the following scan we had five different doctors with us, It’s the strangest feeling… almost like I wasn’t even a person & just some scientific thing that they were learning from? With a few student Doctors in the room, I felt quite uncomfortable with it all. But when our consultant came in he 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 severe 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. I tried to enjoy the rest of my pregnancy and soon I 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 Tenotomy, 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.
Hugo started walking at 17 months old. He’s just conquered running too at 21 months old… He has had a few set backs, His feet actually are ‘over corrected’ can you believe that? We found out Hugo has Hyper mobile legs & hips. So his feet went too outwards & has stayed penguin like. We are in the process of trying to fix it now. There is also talk he may need the Tenotomy in the future.
I’m stronger now than I ever have been. I started a support group called Happy Feet Talipes we have over 500 members now. I don’t know what I would have done without them to be honest.
Life with a Talipes baby is totally different to a baby without Talipes. The issues I have had from… blisters on his feet to his boots rubbing, him escaping, him bashing his sister with his bars. He kicked me in the face the other night… OUCH!
Most of all Talipes hasn’t as yet held him too far back from any other baby. he can walk, run, jump, skip, He even managed to climb out of his cot whilst wearing his boots & bar! I have no idea how he managed it.
We do however still have 3 more years of boots & bars being in our life.
But I honestly wouldn’t have Hugo any other way. My life as it is now wouldn’t be the same at all.
We’ve recently had real troubles trying to get Hugo to allow me to even put his Boots & bar on his feet. So I had a lovely lady put together Boots & Bar to go on his teddy bear, I put together a Book ‘Wear your boots Ted’ now available from Amazon & we’ve tried to make boots & bar time fun. I sometimes really dread 6pm…
I am a firm believer that us Mums can cope with anything thrown at us & God picked me to have Hugo because deep down he knew I was strong enough. I have doubted myself at times but this is our life & I think we are doing it pretty damn well.
Always trying to spread awareness & knowledge for Talipes
If you want any other questions ask away 🙂
Told you he is a cutie, Bex inspires me, she has taken to having a son with Talipes amazingly, using it for good by starting her own support network and writing a book to help children who will be in the same place as Hugo one day. I think she truly is a Supermum in her own right.
Don’t forget to pop back or sign up for post updates (box to the right) so you don’t miss Bex‘s 2nd guest post where she will discuss building a Flat Pack Home.