November 26 2014 Latest news:
Wednesday, February 19, 2014
Watching a newborn baby fight for life would be devastating for any parent.
But Suffolk couple Kelly and Geoff Anthony, faced not only keeping a hospital vigil for seriously ill newborn Ruby - they were also looking after her twin sister Pippa at the same time.
While Pippa was born healthy at West Suffolk Hospital last June, her twin Ruby had struggled to breathe.
She suffered a number of health problems and needed specialist care and surgery at different hospitals in Suffolk, Cambridge and London.
Ruby lost her fight for life at London’s Great Ormond Street Hospital in October.
Mother Kelly, from Cedars Park, Stowmarket, recalled: “During this long week we spent all our time with Ruby; we talked to her, brushed her hair, lubricated her eyes, said our prayers, lit a candle in the hospital’s chapel and had her baptised. We even took her footprints and handprints as we prepared ourselves for the worst.
“There was nothing more the doctors could do to help our little girl and after 10 stressful weeks at the hospital, on the October 25, it was time to withdraw Ruby’s medication and she passed away peacefully in our arms.”
It was a deeply traumatic time for the family, but throughout it they say the support of one charity – The Sick Children’s Trust – was a shining light.
It provided accommodation for them close to the hospitals where Ruby was being cared for, preventing long daily trips.
And now the family are raising money for the charity as a way of thanking it.
Kelly, 35, said: “The first few days of looking after my two new-born babies was so demanding and tiring that both of us were left with very little energy for travelling, so having somewhere to stay that was within the hospital was just perfect.
“We could take Pippa back to our room for feeding and changing and could even cook our own meals in the communal kitchen, which was a god-send.”
The family had been moved at an early stage to The Rosie Hospital, in Cambridge, where after a few days Kelly and Pippa were discharged from their ward.
But instead of then having to make the hour’s drive to be by the side of Ruby, who remained in hospital, the family were given a room as part of a facility managed by The Sick Children’s Trust by the hospital.
Over the next week Ruby came off the ventilator, opened her eyes and appeared to be making improvement. The family were able to sleep just two floors below her and could visit her in the intensive care unit at any time of the day or night.
Kelly said: “When Ruby was 10 days old we were told she would need heart surgery to close some small holes in her heart in six months’ time and so arrangements were made to transfer her back to West Suffolk Hospital.”
While there the family made the daily trip to the hospital – now only a 20-minute drive. Despite Ruby being on a high-calorie formula she struggled to gain weight and it became clear to the doctors her problems were more serious than first thought.
She was taken to Great Ormond Street Hospital, London, as her lung pressure was dangerously high.
“We were devastated but knew she would get the best care possible,” Kelly said. “Again the thought of us all being separated was unimaginable especially as this time we would be over 100 miles away from home.
“But again this worry was only shortlived as on arrival at the hospital we were told that there would be a room available for all three of us at Rainbow House, another ‘Home from Home’ run by The Sick Children’s Trust.”
To add to her heart defects, a Down’s Syndrome diagnosis and lung problems, doctors discovered Ruby had liver malformations. She subsequently had two ground-breaking surgeries, the first of which was eight hours long.
Hopes brightened slightly for Ruby when she was moved from intensive care to a dependency ward where she came off her oxygen for a few days.
She was then moved again this time to King’s College Hospital to be seen by liver specialists.
A couple of days later Ruby took a turn for the worse and was transferred back to Great Ormond Street.
With her lung pressure as high as ever she was placed into an induced coma to try and keep her condition stable, but she died on October 25.
Geoff, 33, who works as a sales executive, has already raised £6,000 for the charity by growing a beard.
Now the family are hosting a chocolate-themed tea party to further support the cause.
It will be a private event, but the family is urging other people to get involved in the Sick Children’s Trust’s Big Chocolate Tea Party.
It runs throughout April and the charity wants people to host their own party. Go to www.sickchildrenstrust.org for more details.