Petes story

Tell me a bit about you?

So about me I’m 31 years old and married to the most fantastic wife, Anna. We seem to spend most of our free time in the gym or out and about walking with our two maniac dogs. I do quite a bit walking with friends as well (will go into this a bit more in a bit) Work wise - since the age of 20 Ive worked in the Prison Service. For the first 8 of them on the landings as a prison officer and although now I am in a more specialist role I am still operational so still working with prisoners - though theres also a lot more time in an office with a computer too now.

What is your limb difference? 

My limb difference is that I was born with a talipes foot. My left foot. Its unilateral (just the one) and the doctors said it was caused by my position in the womb.  By all accounts my foot was quite significantly turned in and twisted upside down.

Strangely it turns out my wife’s sister (Ginny) also had the same problem with the same foot when she was born - but I don’t think hers was as severe as mine. Hers was also believed to be positional.

Though the doctors told my mum it was positional my paternal Nan could vaguely remember there being a distant uncle or cousin of hers that had a ‘club foot’ and my maternal Grandma could similarly remember a distant relative who had trouble with their feet their entire life. Though we’ve never been able to verify either of these accounts.

When I was born my mum asked the hospital if a) it would be something that my children would be prone too if I had any or b) if my mum had other children (I’m the oldest of 2) if they would also have the same issue - again she was told no. Both me and Ginny are the oldest of 2 and neither Anna nor my sister were effected with any issues with their feet or legs etc.

(Hope I haven't lost you with the names!) 

Though we haven’t got kids ourselves - or at this time aren’t planning on having any - it is something we have discussed. That there is a possibility that if we were to have a kid they may be born with a talipes foot - though both me and Ginny have been told it was positional, there is always that wonder ‘what if it was a genetic’ thought - especially as there were whispers from grandparents. I realise how this sounds - this isn’t why we haven't had kids and if we chose to have them it wouldn’t stop us - its just something that we would perhaps raise with a doctor.

  

 

When did your parents find out? 

I’ll be honest, I’m not quite sure when my mum found out about my feet - in all honestly I think it was when I was born! And when I discussed it with her briefly earlier in the year she her eyes teared up a bit. From what I can tell she spent however long on the maternity ward that was normal for then and I think she felt the doctors and nurses were all a bit blunt and cold about my foot - telling her that with a few massage techniques it would soon stretch out. as weird as it sounds Its Not something that I have really discussed too much with her - not because it upsets either of us, I suppose strangely its more just because its my normal and not something I have really been bothered about if that makes sense?

The massages she was told to do obviously didn't work so I was put in plaster casts from a few days old (though again I’m a bit hazy in details). I know mum said if i wasn’t in a cast i would have to wear a boot and brace - but the fitting wasn't great and through the night, no matter what she did I would always somehow manage to slip my foot out of it.

It got to the point that there was no real improvement to my foot and so the ‘specialist’ in the hospital (and I know she uses that term loosely) told her that she would have to expect that I would just be a kid that would never be able to walk and would likely need to be in  wheel chair for life. She obviously wasn't happy with this and took me back to her Gp who made a referral to alder hey children's hospital. (Just realised I’m conscious in this that I keep referring just to my mum - but it was my dad too!).

For a bit of context we lived in a little town called Skelmersdale and I was born in the nearest hospital at Ormskirk. I know you likely know - but just in case Alder Hey is in Liverpool. We were really lucky as Skelmersdale is only about 15-20 miles from Alder Hey.

What help and support have you been offered? / Have you needed to have any procedures? 

Mum can never praise the staff at Alder Hey enough! Yet again I’m a bit short on specifics but I know by the age of about 2 or 3 Alder Hey had performed about 3 operations on my foot to straighten it - and there was still a lot of boots and braces and plaster casts used - but also physio was given. And up to the age of about 16 I would have to go back twice a year for a check up with a specialist. They were happy to discharge me at 16.

My left foot is about 2 sizes smaller than my right. As a kid my mum used to buy 2 pairs of shoes in different sizes as I would often fall over because of the gap at the front of my left shoe. But as i got older (more teens) i would just stuff the front of my shoe with things like cotton balls etc. Now i just buy one pair and don't really stuff the shoe - it would probably feel strange having so much space to some people but its just normal and doesn't cause me any issues. And my left leg is considerably smaller (in size not length). I think there are two reasons for this - partly because tendons in the calf have been so stretched from my operations - but also i know that I massively over compensate with my right leg to lighten the load on my left  - even though its not a conscious decision to do this!

The look of my legs and feet has never bothered me and wherever possible I will always wear shorts over trousers if I can. But that said it has led to some ‘banter’ from mates in the gym about skipping leg day and all that!

What negatives have you encountered?  

It has had some negative effect on me. i’m sure it probably goes without saying that my left foot/leg/ankle are a lot weaker than my right and will always tire sooner when I am exercising and I have had to have physio to the left foot and ankle periodically over the years. In my mid 20s i did have to have an operation to my right foot. Partly this was due to an old rugby injury (i played rugby all through my teens and early 20s) but it was worsened by the over compensating with my right foot that I mentioned earlier. Basically the bone in my big toe (probably as far down as level with the ball of my foot) was so badly damaged that they removed it completely replacing it with bolts and screws and pins!

I don't want it to sound doom and gloom though! As i say - mum was told I would never walk - yet I spent my youth playing rugby. I work as a prison officer and complete a fitness test every year. I do a hell of a lot of walking - as an example I have two pretty major ones planned. The last weekend in June this year I will be completing a 62 mile walk in about 24 hours solid walking. Next year (date tbc as a few things have changed) i am going to complete a charity walk of 140 miles from my house in Leeds to Alder Hey hospital. Though I cant find exact cost - my aim with that is to raise roughly the cost of treatment for a baby now who has been born with similar issues to me as a way if saying thank you to alder hey!

What are the positives about your limb difference? 

There have been the odd small perks to my foot issues - one being I could use it to get out of PE in school whenever I wanted....strangely my foot would always be hurting when I had football but was fine on days we had rugby! And another small victory was that in work officers are issued the most god awful non slip boots - but they cause so many people problems because they are so cheap! They are also mandatory uniform. Because of my foot problems I don't have to wear them and was issued more specialist patrol boots similar to police or soldiers.

What is the best advice you could give to a family who are pregnant or have just had a baby with limb difference? / What advice would you give a kid with a limb difference?

All i would say to kids and families is don't let it stop you! You’re no different from any other kid and if you want to do something - then you’re more than capable of doing it despite your foot or leg! Sometimes you’ll tire before  friends or you’ll be in pain - but bare with it. You’ll learn to manage this as you get older! And we all know kids can be cruel - you might get some comments if there are obvious differences from your legs or feet to other kids  - but it will never stop you!