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Niamh’s Story

Fibular Hemimelia

Leg Lengthening

Niamh was born with fibular hemimelia in her left leg and four toes. Her ankle was also turned out at a 90-degree angle. The general hospital she was born in sent us home, without x-rays, saying they were sure that it was just a case of resetting her ankle. We were shocked, when 3 weeks later, we saw a specialist who gave us the diagnosis and very bluntly said our treatment options were; lengthening or amputation, and sent us on our way with an appointment for Yorkhill hospital in Glasgow.

When Niamh was about one, she was fitted with an ankle foot orthosis (splint as we call it). Over the years this has brought her foot round to a more correct position. She still wears a splint to this day (she is 13 now), to hold her ankle in place. She does not have a normal ankle joint and it is still at risk of becoming dislocated.

As she grew, the length difference in her legs grew to around 7cm by the time she was 4 years old. She had been managing to walk with a shoe raise until that point, but the difference was getting too great to compensate for. Three months before her 5th birthday, her consultant decided it was time to carry out the first lengthening procedure, using a Taylor Spatial frame. We had no idea what to expect so we did some research and came across the STEPS Charity. Steps put us in contact with a family near to us whose daughter currently had a frame on. We met up with them and the advice we received was invaluable in preparing us for what was to come.

Niamh was in hospital for eight days and although it wasn’t easy on any of us, she was brilliant when she settled down. By the time me we left the hospital she was zooming about on her walker frame and wheelchair, gaining confidence by the day.

She had a month off nursery, then went back there to join in most of the activities that the other kids were enjoying. The nursery staff were brilliant with her and we are very grateful for the support they gave us.

The struts on the frame had to be turned every day for 6 months to lengthen her leg and we did this, and the daily physio exercises, religiously. Due to this she continued to have full movement in her knee. Life with the frame took quite a bit of getting used to, however we found ways to do most things (which I am happy to share with anybody who would like to get in touch with me through STEPS). The frame then stayed on for another 3 months, without turning the struts, to allow the bone to grow back together and strengthen. All the time the frame was on we attended the weekly clinic at the hospital to have the pin sites cleaned and to see the physio. When the frame was removed, she went into a full-length plaster cast followed by a half-length cast for a few weeks. Niamh had gained 6 cm in leg length during this time.

As Niamh grew, the leg length difference increased again and was six cm by the time she was 11 years old. During these years, she went back to having a shoe raise to help her walk and straighten her hips. Finally, she went back into hospital to have an operation on the growth plate of her good leg, to slow the rate of growth. This was a very simple operation, done on the Day Surgery Unit, and she was up and walking the same evening.

Over the past couple of years, she has grown 3 cm again and currently has a leg length difference of 3 cm. She sees her consultant once a year now and he is monitoring her growth; to determine if she will need another lengthening surgery, to make up the difference when she stops growing.

Niamh can do everything that her friends can do in day to day life. She has been on outward bound trips with the school and Guides, horse riding and even ice skating. The condition has not stopped her doing anything she puts her mind to and she is a very resilient and strong-willed teenager as a result. We have received invaluable help and advice from her consultant in Glasgow. We are extremely grateful to all the staff we have met over the years.