Jades Story

Tell me a bit about you?

 I’m Jade, I’m a mum of 3 from Yorkshire. I have a 5 year old son, and daughters aged 3 and 10 months!

What is your limb difference?

My youngest daughter Ottilie has a condition called PFFD, this means her right femur is shorter than it should be. It also normally affects the knee and hip. 

When did your parents find out?

We found out when Ottilie was around 6 hours old! The midwife was doing the newborn checks on her as we were desperate to get home and introduce Ottilie to her big brother and sister. Unfortunately this went out the window when they realised her leg length difference and we had to stay in hospital for 3 nights whilst she was tested for all kinds of things (limb differences can also be markers for other conditions such as Down’s syndrome). It was so hard seeing the X-ray she had done on the day she was born, clearly showing her shorter bone, which was also curved(quite typical with pffd). 

What help and support have you been offered?

The staff in the hospital Ottilie was born in were amazing. Nothing was ever too much trouble, and they really looked after us well. In fact my friend is a midwife there and she still gets other members of staff that looked after us asking how we are! We’re now under Sheffield children’s hospital who have also been great so far. I’m a member of a couple of limb difference Facebook groups as well. They have been invaluable, especially at the beginning when everything was so new to us. 

What are the positives about your limb difference?

This is a bit of a tricky one, as obviously Ottilie is still only young, but one of the positives we’re already seeing is just how determined our baby girl is. She is already crawling, as well as pulling herself up. She finds her own ways of doing things and owns it! Another positive has been the way this whole new world has been opened up to us. I’ll admit that before we discovered Ottilie’s condition, I was pretty uneducated when it came to limb differences. Now it’s brilliant to read all these stories of people with varying disabilities, and the way they’ve overcome them. 

Have you needed to have any procedures?

Ottilie hasn’t needed any procedures yet, but she will do, over the course of the next 15 years or so. Firstly, she will most likely need a hip reconstruction in around 1 years time. She will also need a knee operation in the next coupe of years too. Then over the next 10 years she’ll undergo around 4 leg lengthening operations, where she’ll be fitted either with a frame around her leg, or magnets inside. Her leg can be very very gradually lengthened because of these.

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

Don’t be afraid to be sad at first. I was quite low after Ottilie was born. It was like I was grieving this perfect baby I’d imagined arriving. But Now I see my amazing baby girl, and see how determined she is. 

What negatives have you encountered?

Like with the positives, it’s hard to think of many negatives we’ve come across as Ottilie is still so small. I suppose one of the negatives for me is worrying about the future. How much pain will she be in after her operations? Will she hate us for letting her go through them all. I also struggle when well-meaning people say things such as “ooh, she’ll be running around soon enough!”. People mean well, they really do, but it does get to me from time to time.

What advice would you give a kid with a limb difference?

Do not be afraid to be different! Get as much support as you can, know that everyone has your best interest’s at heart.

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