Thank you so much for Evelyn’s absolutely beautiful quilt, it is truly perfect, she was so so grateful and couldn’t believe that people had done this just for her.
She has quite a few planned procedures ahead and I know this will be such a comfort for her in hospital.
We can’t thank you all enough, she has gone to bed cuddled under it tonight
Evelyn was born at 38 weeks after a fairly normal pregnancy, other than too much fluid. When she was born she was frothing at the mouth, coughing and struggling to breath.
She was taken to neonatal where they discovered that she had no connection between her oesophagus and stomach, it was instead connected to her lung (oesophageal atresia), effectively she was drowning in her own saliva.
She was sent to a paediatric intensive care about an hour away from where I’d given birth to her.
Over the next 24 hours she had a scan on nearly every part of her body where they found multiple congenital defects including her heart being the wrong side of her body, an extra toe and spina bifida occulta. This was diagnosed as VACTERL, an acronym for vertebrae, anal, cardiac, trachea, oesophagus, renal and limb. To have VACTERL you have to have 3 of these areas affected and Evelyn has 5.
At 48 hours old Evelyn underwent major thoracic surgery to disconnect her oesophagus from her lungs and connect it to her stomach. It took over 5 hours and was a success, but we were warned that she would have life long issues with her oesophagus.
She stayed in hospital for 3 weeks whilst she recovered and learned to swallow, she would often choke due to dysphagia.
Evelyn continued to struggle to feed in her first year, she had multiple operations to stretch her oesophagus in the hope it would help, but she struggled to coordinate her swallowing and would occasionally aspirate.
When she was 18 months she refused to feed anymore, she was constantly battling chest infections and was scared to swallow due to all the choking. She was admitted to hospital and had a nasogastric feeding tube fitted. This helped stop the chest infections, but was extremely traumatic having to have the NG inserted regularly. Four months later Evelyn had surgery to fit a PEG tube which made a world of difference and she thrived weight wise.
In the past 4 years she’s needed over 20 surgeries. She had her extra toe removed, she’s had multiple MRI’s and had her oesophagus stretched to try to help her re-learn to feed.
Evelyn has since been diagnosed with hypermobility which particularly affects her knee joints. She has hypoglycaemia which often makes her sugars low, we are waiting for tests to find out why she struggles with her blood sugars.
We continue to be seen by over 8 consultants regularly and she will need lifelong check ups.
Her immune system is low and she seems to pick up every virus and usually ends up in hospital with infections. She now has medical trauma/anxiety and finds hospital and doctors extremely scary. She knows that it often involves scary and painful tests and the older she’s got the harder she finds it.
Evelyn is mentally a normal 4 year old, she loves to go to nursery and play with her friends & her big sister.