Indira's Story
Meet Indira – a teeny tiny TOF warrior!
Indira was born weighing just 3lbs 1oz after doctors discovered she had stopped growing in the womb – but couldn’t work out why.
At birth, she had a lot of bubbling at the mouth and was diagnosed with a trachea-oesophageal fistula (TOF) – her oesophagus hadn’t formed properly and was connected to her trachea. Her parents, Neil and Alyssa, were told she would need major surgery immediately. She was just 16 hours old.
Dad Neil says: “The whole experience was terrifying but also surreal. We knew she was small in the womb, so we were prepared in a way but had no idea what to expect.
“After surgery, she spent almost a month in intensive care, sedated for a good part of that time. One of her lungs had to be punctured, so she was on 100% oxygen for the first few weeks before she started breathing on her own again.
“Thinking about how the doctors performed that incredible surgery on someone so little is truly mind-blowing.
“It was petrifying at first as she was so tiny and hooked up to a ventilator. Seeing her with all the tubes and wires was overwhelming, but we gradually got used to it.
“It would be easy to go stir crazy, sitting there day in day out, listening to all the beeping and hospital sounds. You just have to make yourself get used to it – you kind of numb yourself to it.”
We got to hold her the day before surgery, and then had to wait over two whole weeks to hold her again.
- Neil, Indira's Dad
Back in hospital
Things were going well until May this year when Indira caught a virus and started having trouble with her milk. This led to a three-week stay in Castle Mey ward, where she was put under the care of a gastrointestinal (GI) team.
Neil continued, “The GI team decided she needed a NJ tube, which made a huge difference. She gained a third of her body weight in just one month.
“So far, we’re very lucky that the operation seems to have worked and now she has her NJ tube, Indira is stronger than ever.
“Another complication with TOF is limb abnormalities and in Indira’s case, she’s missing a thumb on her left hand so she might need surgery for this down the line.
“We were very grateful to have access to ECHC’s complementary therapy service while staying in Castle Mey. Getting that break from the hospital ward and getting a massage, even just for half an hour, made all the difference to how you felt that day.
“We’ve also since discovered the charity’s Hub, so it’s great to know we can go there for a chat, a cuppa and a little bit of a breather when we’re back in for appointments in future.
“For now, we’re taking things day by day, but we’re so proud of how far Indira has come!”
It costs £1044 per day to bring ECHC’s services, like complementary therapy and the Hub, to all those who need us. You can help us continue to bring more than medicine to children like Indira by making a donation today.
