Children, young people and families are at the heart of WellChild's work - here are some of their stories.
After a fairly uneventful pregnancy, India Stern was delivered early by Caesarean Section. As a second-time mum, Suzy, was initially relaxed when India, just like her older sister Freya (3), was slow to feed in the first few days. However she then began to notice signs that India’s breathing might not be normal and sought medical advice.
Within days, when things continued to worsen, India was rushed to hospital. So began a nightmare time for her family as India’s condition deteriorated further and her breathing continued to be problematic even after the trauma of major corrective heart surgery. Eventually doctors established that India has a chromosomal disorder which affects her development and breathing and that a tracheostomy (a surgical opening in the neck to allow oxygen directly into the windpipe) was needed.
Fortunately for India’s family, Sue Donald had just started the pilot phase of her appointment as a WellChild Complex Care Discharge Coordinator and was soon introduced to them. Suzy was heartbroken, grieving for the baby she had thought she would have and wracked with worries about how the family would cope with the complicated regime that India would need at home.
Immediately the move home seemed nearer and less daunting as Sue introduced her first to other families whose children had tracheostomies and then to the vast team of healthcare professionals who would help look after India once she was home, with Sue always taking the lead on the momentous tasking of coordinating everyone.
Suzy said: “I remember feeling very overwhelmed and wondering how did get here? As I sobbed on Sue’s shoulder she was incredibly supportive, listening to me and not giving me false comfort but practical advice.”
Over the next few weeks Sue rushed around making preparations for India to be discharged from hospital at last, keeping in touch with Suzy at every stage. Despite another recent stay in hospital, things are now going well for India who has been home for a couple of months where she is thriving.
Suzy said: “India is now the smiliest girl in town and her smile was worth waiting for. It’s hard work but we’ve had lots of contact with Sue since we’ve been home which is a tremendous comfort.”