Imogen's Story
After a trouble-free pregnancy, Imogen’s problems at birth came as a terrible shock. She was born with an unusual kind of jaundice and her liver was not functioning properly. She spent the first three weeks of her life in the neonatal unit at the Norfolk and Norwich University Hospital, whilst the doctors tried to find out what was wrong and to stabilise her blood sugars. Thankfully livers are amazing organs and often regenerate over time: the problems began to resolve after around three months, and we were given a cautious “all clear” after 8 months.
We had a very happy couple of weeks, with the “all clear” and a wonderful Christening day. However, we had been concerned for a while that she was having trouble rolling and sitting up and was struggling to hold things. She was our first baby so we didn’t know what to expect, and children vary so much in how quickly they develop – so we were not sure whether to worry or not. We asked about this at an appointment with Imogen’s paediatrician, and the bombshell was dropped – he warned us that her slow development and stiffness might be cerebral palsy, and began to explain the possible implications of this for her life.
Before her SDR surgery the spasticity in Imogen’s legs was quite severe and the more she tried the stiffer her legs became. If she tried to take a step her feet crossed over and her whole body closed in on itself. When she was relaxed she could bear her weight through her legs and we hoped that when the spasticity was reduced by the SDR surgery she would be able to develop some of the strength and control in the other muscles and learn to take steps and transfer herself from chair to wheelchair, etc. Spasticity (muscle stiffness) was her biggest problem in life – it made moving and even sitting, uncomfortable for her and she used so much effort in just moving about. We bought her a fantastic powered Snapdragon powered wheelchair, made by www.dragonmobility.com, that gives her so much freedom and independence outdoors, and she pushes herself in a manual wheelchair too. Before surgery she was also getting stronger at riding her bike – we take her, and her little brother Owen, to pedal power whenever we can www.cardiffpedalpower.org. And she had started to learn to float, swim on her back, and “walk” along the side of the swimming pool at Cardiff Whales Swimming Club www.cardiffwhales.co.uk. Since her surgery all these things have become easier for her.
We’ve all been astonished at how much she has changed. Our expectations were low, and she has already exceeded them. She took her first independent steps on her 7th birthday on 18 July just three months after her surgery, and has been getting slowly stronger and stronger since. Now, after 6 months, she is able to lift her frame a bit and try to steer it, and is learning to transfer from her wheelchair to her walking frame. The stiffness in her legs remains to some extent – the result of almost 7 years of overusing some muscles and underusing others. But we are working to build strength in her weaker muscles through daily physio and strengthening exercises, and stretch the tighter muscles through twice-daily stretches. We have no idea, at the moment, where this journey will take us – but we’re so happy to have set out! (Sue, Imogen's mum and trustee of the charity)
You can read more about Imogen HERE
We had a very happy couple of weeks, with the “all clear” and a wonderful Christening day. However, we had been concerned for a while that she was having trouble rolling and sitting up and was struggling to hold things. She was our first baby so we didn’t know what to expect, and children vary so much in how quickly they develop – so we were not sure whether to worry or not. We asked about this at an appointment with Imogen’s paediatrician, and the bombshell was dropped – he warned us that her slow development and stiffness might be cerebral palsy, and began to explain the possible implications of this for her life.
Before her SDR surgery the spasticity in Imogen’s legs was quite severe and the more she tried the stiffer her legs became. If she tried to take a step her feet crossed over and her whole body closed in on itself. When she was relaxed she could bear her weight through her legs and we hoped that when the spasticity was reduced by the SDR surgery she would be able to develop some of the strength and control in the other muscles and learn to take steps and transfer herself from chair to wheelchair, etc. Spasticity (muscle stiffness) was her biggest problem in life – it made moving and even sitting, uncomfortable for her and she used so much effort in just moving about. We bought her a fantastic powered Snapdragon powered wheelchair, made by www.dragonmobility.com, that gives her so much freedom and independence outdoors, and she pushes herself in a manual wheelchair too. Before surgery she was also getting stronger at riding her bike – we take her, and her little brother Owen, to pedal power whenever we can www.cardiffpedalpower.org. And she had started to learn to float, swim on her back, and “walk” along the side of the swimming pool at Cardiff Whales Swimming Club www.cardiffwhales.co.uk. Since her surgery all these things have become easier for her.
We’ve all been astonished at how much she has changed. Our expectations were low, and she has already exceeded them. She took her first independent steps on her 7th birthday on 18 July just three months after her surgery, and has been getting slowly stronger and stronger since. Now, after 6 months, she is able to lift her frame a bit and try to steer it, and is learning to transfer from her wheelchair to her walking frame. The stiffness in her legs remains to some extent – the result of almost 7 years of overusing some muscles and underusing others. But we are working to build strength in her weaker muscles through daily physio and strengthening exercises, and stretch the tighter muscles through twice-daily stretches. We have no idea, at the moment, where this journey will take us – but we’re so happy to have set out! (Sue, Imogen's mum and trustee of the charity)
You can read more about Imogen HERE
