Amanda’s story…
The start of our daughter's artificial feeding was a relief…
Although the thought of tube-feeding our daughter should have been frightening, it actually came as a relief. From an early stage we knew something was wrong because she was failing to gain weight, but despite repeated visits to the clinic we were simply told to come back the following week. Eventually everything changed and we were sent to A&E, beginning a long journey to find answers.
She was initially fed through a nasogastric tube while different formulas were tried, but it soon became clear that she needed total parenteral nutrition (TPN). Our local hospital was unable to provide paediatric TPN, and we waited weeks for a specialist bed. Eventually we transferred to Addenbrooke’s Hospital, where further investigations delayed treatment even longer. When TPN finally began, spending Christmas in hospital felt like a small price to pay because she was finally receiving the nutrition her body needed.
Our hospital stay lasted four months while doctors investigated the cause of her condition. At the same time, we were caring for our toddler son at home, so I split my time between the hospital and home, always feeling guilty about whichever child I had left behind. Once she was stable, the next challenge was learning how to manage TPN at home. After a delay in transferring to Great Ormond Street Hospital, an Addenbrooke’s nurse went above and beyond by completing the specialist training herself so she could teach us. After two weeks of intensive training, we were finally able to take our daughter home.
Our spare room quickly became a medical storeroom, filled with TPN supplies, equipment and refrigeration. Daily life revolves around deliveries, careful organisation and maintaining strict hygiene procedures. Connecting and disconnecting TPN became part of our everyday routine, and most aspects of our life require careful planning and preparation.
Living with TPN also brings practical challenges. Overnight infusions often lead to disrupted sleep, and we became experts at managing frequent bedding changes. As our daughter has grown older, balancing treatment with school and a normal childhood has become increasingly important. We have always tried to let her enjoy the same opportunities as her friends, whether that is school trips, drama performances or holidays. We also have to ensure that our son receives our attention when needed, so that he does not feel neglected or resentful, while also keeping up with our jobs and other parts of our life.
Travelling requires meticulous planning because the TPN must be transported in cold-chain boxes to retain the right temperature. Every holiday involves transporting large cool boxes, emergency supplies and medical equipment, as well as confirming suitable refrigeration at our destination. Despite careful preparation, unexpected problems still arise, including having to negotiate access to medical refrigeration on a cruise ship after discovering the promised fridge was inadequate. Situations like these can be stressful, particularly when our daughter overhears conversations about how essential TPN is for her survival.
School events and extracurricular activities also require careful coordination. I often attend trips to connect or disconnect her TPN, and evening performances can mean very late nights followed by overnight infusions before school the next morning. Even family evenings out need to be planned around treatment schedules.
Despite these challenges, we have always tried to focus on what our daughter can do rather than what she cannot. She enjoys acting, singing, holidays and time with friends, and we work hard to make sleepovers and family trips possible. We also consider ourselves very lucky to be financially comfortable and to have a great support network around us, both of which help enormously, though we know that others in our situation are not so fortunate.
Managing TPN is demanding and affects every aspect of family life, but it has enabled our daughter to grow, thrive and enjoy as full and normal a childhood as possible.