Help Thomas On His Clubfoot Journey!
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Meet Thomas - our Clubfoot Cutie! Our pregnancy was a bit of a bumpy one. We found out at around 13 weeks that Thomas would be born with a chromosome condition, XYY (or Jacobs) Syndrome which may or may not affect him as he grows older. It was then at our 20 week abnormality scan that they discovered Thomas would have left talipes equinovarus, more commonly known as clubfoot. It's where the foot, or feet, are twisted inwards and downwards. We were scared about what this meant and we weren't given much information at the time although no one seemed overly concerned. A difficult pregnancy ended in Kimberley having pre-eclampsia and needing to be induced at 36 weeks, but resulted in an emergency c-section. Thomas had struggled with his breathing so was in SCBU for 5 days. After all of this, we went home with a healthy baby boy, our pride and joy.
We met with an orthapedic consultant a week later and discovered the journey for treating club foot was a lot longer and more involved than we had been told or had anticipated. We started the weekly casting process as per the widely used Ponseti method. But we noticed Thomas' cast kept slipping. We were always up and down to the hospital but no one seemed concerned, even when I pointed out his leg had started to bow. It was at that point we decided enough was enough as slipped casts can be dangerous, and we would start the process of getting a second opinion.
This was difficult, especially logistically, because of where we live. We fought and fought to get seen and after an initial rejection by the health board, we managed to secure funding for treatment at Glasgow Childrens Hospital.
But things took a turn. Thomas got ill just before treatment was meant to start. Severe bronchiolitis left him unable to breathe for himself and he quickly required a transfer to PICU at Edinburgh Sick Kids, being put on a ventilator. We decided we would transfer his Talipes care as well while we were there and we are so glad we took that decision.
Since then, Thomas has required numerous hospital stays, including another PICU admission. It has been the toughest journey of our lives and hasn't been easy with relying on one income, which isn't always reliable when Thomas is hospitalised so frequently. We still have to travel regularly to Edinburgh which in itself is expensive but without this treatment, Thomas would unlikely be able to walk easily or without pain.
We have already received so much generosity from you supporting our journey. It is so heartwarming as well that so many of you follow his journey on his Facebook page, Thomas & His Talipes Tale. If you wish to make a donation to make Thomas' journey easier on us as a family we would be forever grateful.
Much love x
We met with an orthapedic consultant a week later and discovered the journey for treating club foot was a lot longer and more involved than we had been told or had anticipated. We started the weekly casting process as per the widely used Ponseti method. But we noticed Thomas' cast kept slipping. We were always up and down to the hospital but no one seemed concerned, even when I pointed out his leg had started to bow. It was at that point we decided enough was enough as slipped casts can be dangerous, and we would start the process of getting a second opinion.
This was difficult, especially logistically, because of where we live. We fought and fought to get seen and after an initial rejection by the health board, we managed to secure funding for treatment at Glasgow Childrens Hospital.
But things took a turn. Thomas got ill just before treatment was meant to start. Severe bronchiolitis left him unable to breathe for himself and he quickly required a transfer to PICU at Edinburgh Sick Kids, being put on a ventilator. We decided we would transfer his Talipes care as well while we were there and we are so glad we took that decision.
Since then, Thomas has required numerous hospital stays, including another PICU admission. It has been the toughest journey of our lives and hasn't been easy with relying on one income, which isn't always reliable when Thomas is hospitalised so frequently. We still have to travel regularly to Edinburgh which in itself is expensive but without this treatment, Thomas would unlikely be able to walk easily or without pain.
We have already received so much generosity from you supporting our journey. It is so heartwarming as well that so many of you follow his journey on his Facebook page, Thomas & His Talipes Tale. If you wish to make a donation to make Thomas' journey easier on us as a family we would be forever grateful.
Much love x
Organizer
Kimberley Giles
Organizer
