Parents who made the agonising decision to turn off their baby’s ventilator hope to raise £30,000 in her memory.
Michael and Karen Hughes, of Cupar, cuddled four-month-old Eve as she slipped away after spending her short life in hospital.
In their grief, they have launched a campaign to raise money for Ronald McDonald House, in Glasgow, and the neonatal intensive care units at Ninewells Hospital and Glasgow’s Royal Hospital for Sick Children.
Michael said: “To be able to do something like this in Eve’s memory would really give some sort of meaning to the experience we have had. It will mean we haven’t lost her completely in vain.”
Eve had a unique chromosome 18 disorder which caused complex respiratory problems, congenital heart defects, limb and bone abnormalities, a cleft palate and other significant medical issues.
After she was born on December 17, last year, Michael and Karen’s excitement at becoming new parents turned to anguish.
Former guitar shop manager Michael said: “Eve arrived six weeks earlier than expected, so that was a shock in itself.
“We were terrified to hear as a provisional list of her many issues was rattled off to us by one of the doctors on the day she was born.
“Nothing had been picked up in scans so we were absolutely not prepared for this at all.”
Three days after her birth, Eve was transferred from Ninewells to the Glasgow hospital for a detailed heart scan.
She was sent back to Ninewells, with doctors believing she would grow out of some of her problems but 10 days later her breathing had became so poor she returned to Glasgow for a tracheostomy.
Following the surgery, Michael and social care worker Karen, both 27, were told their daughter would have to go on a ventilator for a few days or even weeks, but she was never weaned off it.
By April it was clear Eve had no quality of life and there were other complex problems with her breathing she would never grow out of.
Michael and Karen were advised by medical staff that without improvement they should consider ending her ventilation to let her pass away.
Michael said: “Learning from the consultants in charge of Eve that she would never have any kind of quality of life but would only continue to suffer, we made the agonising decision to have Eve taken off the ventilator.”
On her last night, Eve was moved into a room with her parents where she fell asleep between them and drifted away peacefully in their arms in the early hours of April 20.
Michael and Karen have been devastated by the loss of their “little fighter” but overwhelmed by the response to their campaign.
In just 18 days more than £19,000 was raised, already surpassing the £10,000 needed to ensure a plaque with Eve’s name will be erected on Ronald McDonald House’s donation tree.
Michael said: “The response has been fantastic and has exceeded our expectations. To see what the neonatal unit was able to do for so many sick babies, even though Eve’s problems were too significant, was incredible.
“Ronald McDonald House is an absolutely essential service which allows families to stay together.
“We were there for about four months. Having to find somewhere to stay or driving back and forth from home every day wouldn’t have been possible. It meant we were at her bedside every day, we would go in the morning and stay until late at night.”
To donate to the campaign visit the Eve Hughes Memorial Fund page at https://www.gofundme.com/3ohyfzc
