Chloe was born 10 weeks early and when she was 2 weeks old developed necrotising Enterocolitis which is where part of the bowel dies.
Chloe had surgery to remove the dead bowel which meant the loss of 90% of her large bowel and a section of her small bowel. She spent 4 months in a special care baby unit before being allowed home. A year later (on Christmas Day) Chloe needed surgery again as she had developed an obstruction in her bowel due to extensive scar tissue.
The next few years were uneventful. Chloe was fed overnight through a tube to help with nutritional problems caused by her lack of intestine but she could eat normally which was something she loved to do.
In 2011, Chloe was 13, she experienced another obstruction and needed another major operation it was following this operation that all Chloe’s problems started. She took a long time to recover and when she did get home she was unable to eat or drink without a considerable amount of pain.
Up to this point all of Chloe’s treatment had been at Southampton General Hospital. They felt that Chloe’s pain was psychological and refused to treat her. We were feeding Chloe through a tube into her stomach but that was causing her pain and she was losing lots of weight. We sought a second opinion and were told that the Gastro team at Chelsea and Westminster Hospital would see her. Chloe was admitted and put on an intravenous food that completely bypasses her gastrointestinal system. In the 2 years that Chloe has been under the amazing Chelsea team she has had numerous long (8weeks +) admissions and several operations to remove more obstructions. She has had two major operations this year already spending 18 weeks in hospital so far in 2014.
I have 3 other children and I’m a single Mum and live in Basingstoke so find Chloe’s hospital admissions very difficult to manage. Although she is 16 now, she has learning difficulties and as her emotional age is similar to that of an 8 year old she doesn’t like to be left on her own and gets scared easily.
The hardest part is not knowing when Chloe could need to go into hospital again. Plans are constantly cancelled. Holidays cancelled. Every time Chloe feels unwell the other children get upset because they sense that they are going to lose their Mum and sister again. We had tickets to see Shrek the musical, Chloe had to go into hospital so we missed it. Birthdays are missed, with promises to celebrate them properly at a later date. Life when you have a child on TPN is never easy especially for other family members but living with this degree of uncertainty means that no one ever really looks forward to anything as they are aware that it may not happen. This charity is so important as families will not feel so alone. Hopefully siblings can meet up and feel that they can be understood in their feelings. Everything during a hospital stay costs money. The television at the bedside which has been so useful for Chloe as a distraction when she has been in pain is £7 per day. Donations will mean that things in hospital might be a little easier but more importantly it will mean that people care about these children and their families.