Syndactyly Release And Infections- An Update

Many of you may be aware that our son Jimmy has a condition called Syndactyly. His middle and ring fingers on both hands are fused to the tip, with his nail beds joining as one. The condition isn’t are rare as you may think… 1 in 2000 people are affected! A surprising number really.

Jimmy’s hands.

When Jimmy was 8 weeks old we met our surgeon at Bedford hospital. He reassured us that once Jimmy was 1 year old he would have X-rays to check the bones and have the first of his operations to separate his fingers. Off we went, happy to await Jimmy’s 1st birthday.

Unfortunately, not long after that appointment, Jimmy started getting infections within the tip of his fingers where the 2 nails join. Cutting his nails became an issue as the nails grew straight downwards. We booked in to see our local GP who prescribed a cream, which unfortunately made zero difference to the infections. Yesterday afternoon Jimmy woke from his nap and I noticed that his infected hand had been bleeding. I cleaned the wound and that was that… I wasn’t too worried as it had happened before. An hour later, the nails started to bleed again, quite badly. 🙁

I called the Plastic Surgery department where Jimmy’s surgeon is based at Bedford hospital. They told me that an emergency appointment would be made for the next day (today). So today, we made our way off to the hospital and saw Jimmy’s surgeon. A lovely man, who is very calm and knowledgeable. He explained that while the odd infection isn’t uncommon, the bleeding isn’t good at all. His surgery would be flagged as urgent and rather than starting the process when he is 1, we would start the process now and Jimmy shall be added to the operating waiting list.

Due to the waiting list, we are looking at October time when Jimmy shall have his first operation to release one of his hands. The 1st hand will be his left hand, which is the infected hand. In October Jimmy will be 13 months old… much younger than the predicted 18-24 months that he would have been, without any complications.

Jimmy has Syndactyly, but that doesn’t stop him from playing with toys!

Jimmy will need Xrays done first to check what the bones look like. If the bones are both separate and it’s just the skin that is fused he can have his operation at Bedford hospital. If the bones are fused (which is likely) then the operation will have to be completed at Great Ormond Street hospital in London.

So, that’s our little update. Hopefully, I will have nothing more to write about Syndactyly until we start the process of the release. Hopefully, the infections stay minimal and far apart! Fingers crossed… *was that an intended pun?!* 🙂

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We Met Our Surgeon

Our son Jimmy was born with syndactyly on both hands. We didn’t know that he would be born with this condition. It was only as he came screaming into this world, that we realised his fingers were fused.

For UK support, visit the FB page on the poster.
Jimmy’s hands.

Jimmy’s syndactyly is not a random occurrence. It is hereditary, from my husband’s side of the family. My brother-in-law had 2 fingers fused up to the knuckle on 1 hand, and my father-in-law has 2 webbed toes. Little Jimmy’s syndactyly is more complex, with his ring and third fingers joined to the tips on both hands, and partial webbing on his 2nd and 3rd toes on both feet. His digits may look a little odd, but damn! they’re cute.

We Met The Surgeon!

Jimmy had his appointment last Friday at Bedford Hospital, our local hospital and where he was born. I had no idea what to expect from his first visit to the surgeon, and I had lots of questions (most of which I actually forgot when I was in the room!) but we were so excited.

His surgeon explained that although syndactyly is rare, it isn’t that rare. Around 1 in 2000 children are born in the UK with syndactyly, a number that I was rather surprised with. He said that Jimmy’s syndactyly is called Bilateral Complete Syndactyly, 2 fingers joined completely on both hands.

It is a progressive deformity, meaning that as each member of the family inherits it, it does get worse with each generation. So as Jays dad has it on his toes, his brother then had it on his hand and now Jimmy has it on both hands (and feet)- the condition is slowly getting more complex. If Jimmy has children, there is a chance the syndactyly could be even more complex.

Jimmy’s surgeon has told us that he will be operating on one hand at a time, something I’m not sure if I am pleased about or not. On one hand (pun totally intended) he will have 1 hand cast-free to use to play, eat, etc with- which is great. But, I was hoping to have both hands operated on at once, meaning that he only has to go under general anaesthetic the once (unless future surgeries are needed) and the job is over and done with in one go. Swings and roundabouts really. I may request that both are done together and see what the surgeon says.

As most syndactyly surgeries require skin grafts taken to add to the operated fingers, I asked which site the graft would be taken from. We were told it would most likely be his hip, but the Dr did say that he may not even need a graft being taken! Let’s hope Jimmy’s surgeon is as good as he sounds.

After the operation has been done, a cast is worn over the wound. It’s not a small cast either, but up to their shoulder! It’s huge! I asked about this and what we can do to help prepare for such a cumbersome cast. We were told that there is actually a new type of cast being tested. Apparently the limb is put in a tube, and the tube is then filled with an expanding foam. This new type of cast means that it is lighter, softer, less sweaty and a reduced risk of Jimmy wiggling out of it! Sounds interesting, huh?!

Jimmy wont be having his toes operated on, as syndactyly release on toes tends to be only done for cosmetic reasons, which at the moment he isn’t bothered by. He wont be able to wear flip flops though… luckily we are a Crocs family 😉

So when will it all happen?

In a year. Once Jimmy has had his 1st birthday, he will have X-rays done and his operations booked! It sounds like such a long while to wait, but the days go fast and I am sure that before we know it, his appointment letter will land on the doormat!