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Joy as Eloise nears her first birthday

PUBLISHED: 14:26 22 January 2009 | UPDATED: 14:50 14 July 2010

Miracle baby Eloise Sharpe.

Miracle baby Eloise Sharpe.

WHEN she was born with a rare heart condition, little Eloise's parents were warned that their daughter might not survive without a life-support machine.

WHEN she was born with a rare heart condition, little Eloise's parents were warned that their daughter might not survive without a life-support machine.

But Sharon Stebbings and Paul Sharpe are gearing up to celebrate a special date they never thought would see on Friday next week when their brave daughter has her first birthday.

The little girl, who has a large hole in her heart and other complications, has already undergone open heart surgery, but still faces a battle against the odds.

Her parents, of Knevet Close, Attleborough, who also have a son Kallum, six, thanked the life-saving support of the staff and doctors at East Anglian Children's Hospice (EACH) at Quidenham and Birmingham Children's Hospital.

Miss Stebbings, 35, said: "Ellie is now reaching her first birthday and we never thought we would see that. If it weren't for services like that then I dread to think what would have happened. We spent an awful six weeks watching her every day and thinking she was going to die. It makes me feel ill now to even think about what we went through."

Eloise was born with a cleft palate, but at six weeks old she was rushed to Great Ormond Street Hospital, where she was diagnosed with an inoperable congenital heart defect, which meant she had no central pulmonary arteries and a hole in the heart. Doctors warned that the baby might not survive without a ventilator, but Eloise decided for herself by pulling out the life-support tubes.

The family was referred to the EACH hospice at Quidenham for end-of-life care, but Birmingham Children's Hospital gave new hope by offering heart surgery, with a 50/50 chance of success. She was just 12 weeks old when she underwent the surgery and is scheduled to have another operation in about two months.

In the week she turns one, Eloise, who has DiGeorge syndrome, of which congenital heart defects, low immunity, cleft palates and learning difficulties are all symptoms, will have an MRI scan as doctors are concerned that she may have suffered a stroke following her first surgery or that she possibly has cerebral palsy.

Miss Stebbings said she could not thank EACH enough, whose staff have arranged for her daughter to go to Banham Zoo, given advice and support to Kallum's school, and offered the family counselling and respite care twice a month.

"A lot of people think she's doing fine as she looks okay, but we don't know what the future holds for her. But she is the happiest and most content of babies and we are such proud parents. She is one determined little girl," she said.

The family is holding out hope that in the future more will be known about conditions like Eloise's and that advances in medical science will give children like her a better chance of life. They are also hoping to raise awareness of congenital heart defects and raise money for the British Heart Foundation, HeartLine, and EACH.


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