Hi again everyone! Today I’ll be talking about my Mother’s pregnancy, and my early years from 0 – 5 years old. I thought this may be a helpful topic to talk about as I have not found much information online while researching this topic myself.

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What is PFFD?

Proximal femoral focal deficiency (PFFD), also known as Congenital Femoral Deficiency (CFD), is a rare, non-hereditary birth defect that affects the pelvis, particularly the hip bone, and the proximal femur. The disorder may affect one side or both, with the hip being deformed and the leg shortened.

Because of this condition, I personally have had to wear a prosthetic leg from birth, and undergone operations to fix the deformed leg including having the foot amputated.

Pregnancy and birth

My Mother and Father found out about my PFFD around 12 weeks pregnant in 1996. They were originally told that I had no femur bone in my right leg at all – but later found out I did in fact have one, it was just exceptionally small.

Initially they were worried, and like most of us – had never even heard of PFFD. One thing was for certain for my parents though – no matter what, I was here to stay.

My parents were also told that I may have other difficulties such as being unable to speak and possibly even paralyzed, but this was just speculation from the doctors. I was also tested while in the womb for Downs Syndrome, which came back negative.

My Mother spoke to many doctors with my Father about PFFD before I was born to try and find a reason behind me having it – but there were never any clear answers.

My Mother is epileptic, and at the time of her being pregnant was told that she could take certain tablets – however, these tablets are now NOT advised for pregnant women at all, as they can cause many problems with the fetus including limb deformities. Doctors still couldn’t say for certain if this was the cause of my PFFD, again, they never really had any clears answers at all.

The rest of my Mother’s pregnancy was full of tests on her and visits to hospitals, meeting lots of new doctors & medical students that were fascinated by the case (as PFFD is so rare).

She was induced to start labour and I was born early 1997, a very healthy baby weighing 6lb 6oz.. However, there was another surprise! I am also missing the little (or pinky) fingers on both of my hands – this hadn’t been picked up in the pregnancy scans, and 2 of the fingers on my left hand were fused together.

As you can imagine, my parents were surprised to learn about my missing fingers also, but were just relieved that I was a healthy baby otherwise. I was sent for an operation in the early months of my life to have the 2 fingers that were fused together on my left hand separated, and then all was well.

Early years

From very early on, my parents were given the option for me to have the symes amputation and knee fusion. This was a very tough decision for them to contemplate – as I would get around very happily using my ‘little leg’ and ‘little foot’, so they decided to leave it and see how things went as I grew older.

I was given my first prosthesis around age 2, but at first I really didn’t like it! I’d always try to take it off and prefer to crawl & hop around without it on. It was a struggle to get me used to wearing the prosthesis, and I only really started properly wearing it around age 4.

I remember the prosthesis appointments very well; I found them exciting as I’d get to play with loads of toys and other children that were also visiting the hospital, plus I’d get a chocolate bar after every appointment from the hospital staff! I’d always choose a curly wurly haha! The staff were always really kind and understanding, sometimes I’d have tantrums(as toddlers do) about having to continuously take my leg on & off, but they’d be totally fine with it and just distract me with the toys until I calmed down enough to continue the appointment.

My parents would dress me in loose fitted clothing to make room for the prosthesis, I also found it easier to walk with the prosthesis when I was wearing looser clothing. I could only wear shoes that had Velcro or laces to do them up, rather than ‘slip on’ shoes – these would easily fall off as I was running and playing around.

I distinctly remember a favourite toy push bike of mine that was supposed to be just sat on, but I’d rest my little leg on the seat and use it a scooter! So much fun!

Starting Nursery

I started Nursery around age 5, and I only have positive memories from this period in my life. My leg would never even enter my mind, and the nursery were so accommodating to me and any difficulties I had.

Other children didn’t even notice my leg, and when they did they were just curious! At this point in time I think I was only just starting to notice that I was different, but again, It really didn’t bother me and I was just as happy as any other child. I’d sometimes take my leg off in class if it was uncomfortable without a second thought!

A funny little memory I have of nursery is being in the playground with my friends.. I was wearing shorts and a wasp landed on my prosthetic leg & I watched it attempt to sting it – poor wasp! My friends were very impressed though, and wouldn’t stop talking about it all day.

The one thing I remember finding difficult is sitting on the carpet for story time, as my prosthesis at the time had no knee joint so was just straight out in front of me unable to bend – my nursery were always very accommodating, so let me sit on a chair instead of the carpet which was a lot comfier.

I’d use all the play equipment outside just like all the other children, and have an amazingly fun time doing so!

My favourite memory from nursery is winning the sports day scooter race, I couldn’t believe I’d won – it felt amazing! I’d love to feel that carefree and confident again, and I hope to one day.

Pregnancy and early years can be tough for anybody, even more so when PFFD is in the mix! I think the best way to stay positive is to remember that even though PFFD may make you different and have tougher experiences than others – at the end of the day we WILL live very happy, fulfilling lives despite our differences!

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