Jed’s Story

For those of you who are reading this, I am guessing that you have just found out your baby has Clubfeet. You are madly searching the internet for some answers, stories, pictures, anything to make you understand and learn what life will be like for you and baby. For me and my husband, life with our baby, now 4 has been at times stressful, emotional and tiring but like all parents I wouldn’t change it for a second. I have become a better person for having a child with Clubfeet and I thank my lucky stars everyday that he has a condition that is treatable.
I want to share my story with you in the hope that what you are facing becomes less confronting…

We found out we were pregnant and the normal pregnancy routine began. At our 20 week scan it was picked up that our baby had enlarged kidneys and bilateral talipes, because these things can be associated with downs and other genetic problems an amnio was booked. This came back all clear. Always on my mind, my baby’s feet became my life. I researched, I surfed the net, I contacted other parents but nothing really satisfied me until the 14th of April 2005 at 12.10pm when my son was born. As “instructed” my husband placed him on my chest wrapped up ready for me to look at his feet, and there they were two perfect little feet only “crooked” (as his cousins call his feet).

We live in a small rural town in south western Queensland and the nearest treatment centre is Brisbane a 600km drive one way, so needless to say we have clock up countless hours of travel in the past four years. Jed started serial plaster cast from 6 weeks of age. These were your normal plaster of paris cast from toe to groin, heavy and bulky but still, Jed was able to swing his legs around, sleep comfortably and be breastfed as normal. We did miss those newborn baby snuggles but have made up for the ones missed and some. These casts where changed every week for 4 weeks. There was a remarkable difference with each change and after the 4th visit his feet almost looked normal. From here we progressed to strapping. This consisted of athletes tape strapped to a plate under his foot then taped to his legs. On either side of the tape where buckles that we had to adjust each day. These where changed each week for 5 weeks. He was fitted with his first dennis brown boots on the 27th July 2005, these where our biggest challenge. This is when I felt most vulnerable as you could take them off!! If he was unsettled, crying or sick the temptation to take them of was unbearable. I hated them, but I did persevere!

Then came Jed’s first operation Achilles lengthening at around 8 months of age. I did question having surgery and wondered if casting and other treatment would be just as effective, but the end result confirms that all our decisions for treatment have been the best for him. This operation was a day surgery. It took approximately 2 hours from the time he went in till we saw him in recovery. This is really daunting and heartbreaking seeing your tiny baby lying in recovery tubes, plastered legs etc but he handled it all very well and we where sent to our motel 4 hours after he was taken to his hospital bed. He slept fine that night and we where on the road the next morning at 10am. these cast stayed on for 5 weeks with no worries. He actually started crawling whilst in these cast at 9.5 months. From here we continued with the DB boots, finding it so much easier to put his foot in now that his achilles had been dropped.

Around his 1st birthday Jed had his second op, a bilateral spalt or tendon transfer. This operation was around 31/2 hours. Jed arrived back to his room on a morphine drip very lethargic, quiet different to his first operation and quiet scary for us. His plasters full length again but with splits up the front incase of swelling and bleeding. He didn’t sleep very well that night, but was fine to go home around 12pm the next day. The plaster was covered over with fibreglass casts in blue, his first coloured plasters (now I think he has had every colour available!! These stayed on for a further 6 weeks, during this time Jed got chicken pox, quiet a severe case. He had them under his casts. This was really hard as we new they couldn’t be taken off and we couldn’t bathe him to relieve his itches. His little feet looked terrible when the casts were removed but still a vast improvement on his clubfeet. He wore his boots for 6 months after this op, only at night…….. and this is where treatment finished for us. Until 3 weeks ago. Jed is now in the process of having more casts on his left foot as he has a problem under his foot that is causing it to turn again. A surgery will be done in the coming months, when his foot has been stretched into a better position with serial casting. Jed also has a baby brother, Tom 18 months, born without clubfeet.

In my intro I stated that I have become a better person, I say this because I have met some amazing people on this journey with Jed and discovered that we can achieve dreams even with set backs in our lives. From the day we found out Jed had Clubfeet my life became “complicated” and for some reason I decided that I was going to work on achieving some goals that I had been putting off. So I opened a gift shop, with my Mum (and my best friend) a dream we have always shared. We spent the first months of Jeds life traveling back and forth to appointments and trying to establish a small business. Its amazing just what we a capable of when we least expect it. I have learnt and grown a lot from having had Jed and the adventures we have shared as a family.

I also had the pleasure of the services of “Angel flight” for 4 of our trips to Brisbane. This fantastic organization has some wonderful people working for it and all are volunteers. This is a charity worth remembering if you ever need medical help and distance is a problem.

So in closing I want to say KEEP YOUR CHINUP our babies are going to be great, they will achieve and they will do all the things we were scared about them not doing in the beginning. They make us much better people for having them. Good luck with your Clubfeet babies.

Please feel free to email us if you have ANY questions about Clubfeet and how it affects your life.

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