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Cononley family backs hospital heart fund
3:20pm Saturday 26th September 2009 in Skipton & District
Watching Cononley Parish Council chairman Lois Brown at work conducting meetings, few would have guessed her secret heartache.
But, for two years, instead of going home after the debates, 31-year-old Lois would often head back to Leeds General Infirmary to be at the bedside of her sick baby, Amelie.
For Amelie had to face open heart surgery three times before she had even reached her first birthday.
Lois and husband Julian, 35, of Skipton Road, Cononley, who also have a five-year-old son, Toby, spent three-and-a-half months living full-time at the hospital while doctors saved their daughter’s life.
“Parish council meetings were the only thing I came back to Cononley for,” said Lois. “It was a bit of sanity in a world that was so surreal. I know it sounds a bit mad, but it was something normal.
“No one could ask me about Amelie in parish council meetings so I could shut myself off and stop worrying for a while.”
Now, nearly 12 months later, adorable Amelie, who celebrates her second birthday in November, looks the picture of health and is thriving thanks to the life-saving surgery. Lois discovered at her 20-week scan at Airedale General Hospital that her baby was suffering from a congenital heart defect called Tricuspid Atresia.
“It has been a roller-coaster ride and we feel so grateful to have come through it,” said Lois. “I had the scan at Airedale General Hospital and it identified a defect in Amelie’s heart.
“It was a big shock and they couldn’t tell me whether it was something they could correct or that my baby would be born with something making her not viable at birth.
“When I found out that it was something they may be able to deal with it was a big relief.”
Lois said doctors told her Amelie would have to undergo open heart surgery after she was born and she went into theatre for the day-long operation to insert a gortex shunt when she was just five weeks old.
After complications, a second day of surgery was required the following month.
“You never admit to yourself just how serious it is,” said Lois. “Just before the second surgery the consultant said he expected her to be sparkling by that point and he said she was far from that.
“We were really fortunate in that there’s accommodation for parents at LGI. My little boy Toby used to come and stay at weekends and we would order takeaway pizzas and try to be a normal family.
“Through the week he stayed at home in Cononley with my mum and dad and kept up the normal things, such as nursery. We were very honest with him and answered all his questions.
“You just get on with it. Five sets of parents lost their children while we were there. We were very fortunate.”
After the lengthy recuperation at LGI, Amelie began to thrive and gain weight but, in October last year, she caught a severe sickness bug. Lois says matters escalated after she realised Amelie had stopped breathing.
“I heaved her out of the car and I gave her mouth-to-mouth resuscitation and she started breathing again. If you had asked me how to do that before I wouldn’t have known, but somehow I did it,” said Lois. “The next day I had terrible flashbacks playing it back in my mind.”
An ambulance responded swiftly and Amelie was taken to LGI. Although she was very sick and weak, open heart surgery for the third time was the only option and the surgeon gave up his birthday to conduct the life-saving operation.
“That was a long operation, about 10 hours long,” said Lois.
“You just watch endless TV on the laptop to stop you from turning into a nervous wreck.”
The operation was a great success and now Amelie is going from strength to strength and thriving like any other boisterous toddler.
“We’ve had the odd blip, but she’s doing very well,” said Lois. “To look at her you would never know what she’s been through.
“Amelie is very determined. We’ve been through a lot, but I don’t want to wrap her up in cotton wool as I don’t think it would be good for her.
“You never know what will happen in the future so we’re making the most of every minute.
“We feel very fortunate and blessed to have Amelie alive and well and are looking forward to our future together.”
Amelie will have to undergo further heart surgery when she is aged between four and six and, ultimately, a heart transplant in her mid-30s unless there are advances in medical science.
* Lois is backing the Children’s Heart Surgery Fund which is based at LGI and is raising funds to refurbish the playroom.
“The playroom is extremely important for the children who are sick and also important for their siblings. Being on a ward all day, they need an outlet,” said Lois, whose family has raised thousands for the fund which backs research, equipment and facilities for parents.
“There are an awful lot of children affected by heart defects and we want to do all we can to raise money for the Children’s Heart Surgery Fund. It’s the least we can do,” she said.
The fund is a registered charity based at the Yorkshire Heart Centre in Leeds General Infirmary, which covers Yorkshire, Humberside and the North Midlands. The CHSF funds valuable equipment, resources and research for the treatment of children with heart defects and provides a happy and relaxed atmosphere in the hospital for both the children and their families.
Every year 10,000 children pass through the paediatric heart unit at the LGI and around 330 of these undergo open heart surgery. Over 40 per cent will need long-term care. For further information about the fund or to make a donation, you can go to the website chsf.org.uk