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.
Once we were home we still had to make several trips back to hospital and down to Kings College Hospital in London for tests, including a liver biopsy without anaesthetic when she was only ten weeks old! We still have no idea what caused the liver to be so damaged or underdeveloped. 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. Almost exactly at the same time Bruce heard that he had been successful in a job application to the University of Glamorgan, and so we moved to Cardiff, where we knew nobody. It was difficult to come to terms with her condition, particularly as doctors can’t predict how things will develop – we just had to wait and see. It was hard for us to accept, to begin with, that we were not going to be able to “mend” Imogen by our own determination and efforts at therapy.
Thankfully, as well as having excellent care from the medical professionals we see in Cardiff, Imogen was referred to the Bobath Children’s Therapy Centre Wales www.bobathwales.org, and she received her first block of therapy before her second birthday. The staff there have made a huge difference – Imogen learnt to sit up for the first time as a result of this first set of visits! Every small milestone is a cause for celebration. Like many children with cerebral palsy Imogen’s understanding and communication skills are good, and we are determined that her physical difficulties should not hold her back in life. She attends a mainstream school with 1-on-1 support and is very happy there and making good progress, albeit not at same pace as her peers. She has a group of good friends and is a thoughtful and caring person with a very good memory for people and the details of the lives of those she meets. She is musical and has a lovely singing voice.
The spasticity in Imogen’s legs is quite severe and the more she tries the stiffer her legs become. If she tries to take a step her feet cross over and her whole body closes in on itself. When she is relaxed she can bear her weight through her legs and we are hoping that when the spasticity is reduced by the SDR surgery she will 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) is her big problem in life – it makes moving and even sitting, uncomfortable for her and she uses 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. She is 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’s also learning to float, swim on her back, and “walk” along the side of the swimming pool at Cardiff Whales Swimming Club www.cardiffwhales.co.uk.