PFFD – The Next Steps

PFFD – The Next Steps

It’s taken me 2 weeks to write this post – I wanted to get it all written down, and also needed time to process it all.

21-11-2018

I’m sat writing this with my beautiful 11 week old daughter sleeping on my chest. 11 weeks! Part of me feels she’s been here forever, our final little puzzle piece. The rest of me feels like she’s not been here two minutes. If you’ve hung around here for any length of time, then you’ll know that when she was born, she was diagnosed with a rare condition that goes by the name of PFFD (proximal femoral focal deficiency). If not then see here for a bit of an explanation.

Back then I was full of questions. Wondering how our littlest one’s diagnosis was going to affect her. Worried for her future. Guilty, questioning whether I’d somehow affected her growth in my pregnancy (we soon learned this wasn’t the case. PFFD seems to just be ‘one of those things’, with no real reason for its presence). For a more detailed explanation see here.

This morning we had our first appointment with the consultant orthopaedic surgeon at Sheffield Children’s hospital. I’d been willing for today to come quickly, at the same time I’ve been dreading it. We’ve been getting to know O as our little baby, our perfect little girl. I didn’t want anything breaking our newborn/small baby bubble. However, after this morning, I feel like a weight has been lifted. I totally trust the consultant. He answered all my questions (believe me, I had a long list!), and was so informative.

He calculated that baby O’s projected discrepancy between her two legs will be 16cm. This is classed as mild to moderate PFFD. It’s hard to imagine this difference, as it’s only around 3-4cm at the moment, so not really that noticeable unless you were looking for it. But obviously as her legs grow, then so does the difference.

baby laid on mat

The Plan

The consultant has given us a rough plan. PFFD typically affects the hip, femur, and knee. At around 2 years of age, O will need an MRI to check how stable her hip is. It is most likely that she will need an operation to make sure it is strong enough, and doesn’t constantly dislocate.

This will be quite a big operation, and she will be in a spica cast afterwards, to keep her hip in place whilst it heals.

What happens in the years that follow is basically our decision. We can either go down the route of leg lengthening – this would involve multiple operations (3 or 4) on her little leg. Each time they would break the leg, then fit a frame that would need to be adjusted each day to make the gap in the bone bigger so the new bone would grow in between. They would also do a procedure on her good leg at some point, to stop it growing. This all sounds very manner of fact written down like this – but the reality would no doubt be very difficult. Months of recoveries, lots of time off school.

The next option is amputation. I presume this would be below the knee, although I’m not 100%! O would then be fitted with a prosthetic leg. Although this means less operations, it also has its own obvious drawbacks.

Before all this, O will wear a raise on her shoe, on her smaller leg. This will enable her to walk more easily. It’s all still very unknown, I don’t really know when she’ll get her first raised shoe.

Thankfully there’s no pressure to make any immediate decisions. Our consultant’s last words to us were to enjoy our baby, because that’s what she is. A normal, beautiful baby.

Our next appointment is in 6 months time.

Until then, we will continue to be amazed at our little girl, number 3, a girl who I’m certain is going to amaze us all.

Baby looking at camera

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