My gorgeous nieces, identical twins, Charlotte and Eva were born on 5 August 2011 when my sister Sarah was just 28 weeks' pregnant. Charlotte weighed 1.14kg (2lb 8oz) and Eva 985g (2lb 2oz). Due to their extreme prematurity they both needed to be put on ventilators, fed through tubes and looked after in neonatal intensive care. When she saw them for the first time, Sarah describes her daughters as looking less like babies and more like wounded sparrows, tangled in a mass of wires and tubes, and surrounded by bleeping machines. 

Eva was diagnosed with Tracheo Oesophageal Fistula and Oesophageal Atresia (TOF/OA) soon after birth. Put simply, her food pipe hadn't formed properly (there was a gap) and her stomach was instead connected to her wind pipe. This is what had caused Sarah to have excessive amniotic fluid, because Eva couldn't swallow, which in turn caused her to go into premature labour. Eva went to surgery the day after she was born but was too unstable for the doctors to do anything more than disconnect her stomach from her wind pipe, and thereby save her life. She had to wait until she was bigger and stronger before they could try to connect the two ends of her food pipe.

After 79 days in hospital, 5 days before Sarah's due date, and weighing 2.69kg (5lb 15oz) Charlotte came home. 

On the second attempt to connect Eva's oesphagus, the surgeons found that the gap had widened, so once again they needed to wait, this time until she weighed 5kg before they could perform a different type of operation. In the months that followed, Eva had to stay in hospital, but was thriving - growing well, smiling, playing on her mat and generally behaving like a newborn. 

Tragically and unexpectedly she never woke up from her next operation, having experienced global brain damage during or after surgery, and died at home in Sarah and Dave's arms on 23 February 2012. Eva had been in hospital for 197 days. She died on Day 201, aged six months. 

During the 6 months in hospital Sarah and Dave received incredible support from several charities, including Bliss, who provided guidance and information during such an overwhelming time. 

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