Greenock girl has fought back against all the odds to survive open heart surgery and organ failure

Gracie Wade, is only four, but has already spent months in hospital fighting for her life.

The youngster has Down's syndrome and was born with a serious heart defect.

It left her so exhausted that she wasn't feeding properly.

Her mum Amy, 22, of Oxford Avenue, said: "She was feeding fine at first.

"Then she wasn't taking as much milk, then it was just little sips.

"Gracie was struggling to feed because she was so tired as her heart wasn't working properly.

"She was put on a feeding tube but that didn't work and the doctors said she needed surgery."

Amy was born with an atrioventricular septal defect called AVSD where there are holes between the chambers of the right and left sides of the heart.

This mean the valves that control the flow of blood were not formed properly.

Amy said: There was nothing to keep the oxygenated and non-oxygenated blood separate."

After facing up to the fact that Gracie would need an operation, her family were then hit with further setbacks as she was bein prepared for surgery.

Amy said: "Gracie was sedated but then her tummy began to expand and it turned out she had a gut infection.

"They had to postpone it for two weeks."

A fortnight later the little tot was taken into the operating theatre at 8.30am and her family didn't see her until 8.30pm that night.

Amy said: "Doctors told me they inserted something as delicate as a flower petal to repair the faulty valve."

Amy, along with Gracie's gran Janette, 50, kept a vigil at the little one's bedside and stayed at Ronald McDonald House.

They were there every step of the way of Gracie's recuperation, which lasted two months.

But worse was to come for the little fighter when she was struck down with pneumonia and bronchiolitis at only 10 months old.

Amy said: "It was really distressing to see her struggling to breathe. "I took her to the GP and she was referred to hospital straight away and was sedated and put on a ventilator in the intensive care unit."

When that didn't work she was attached to an oscillator, a new type of ventilator used for very sick babies to keep the lungs open.

But Amy was then hit with the devastating news that they couldn't use the life-saving machine any longer, as it was damaging Gracie's lungs.

Her organs started to fail and she was put on kidney dialysis.

Amy said: "They told me they didn't know if she was going to survive and to ask my family to come to the hospital.

"I don't think I was taking it in.

"We never got told why her kidneys failed and there was something wrong with her liver too.

"I think the doctors were trying to protect me and not tell us everything because they knew I wasn't really taking it in."

Amy says that terrible time in her life is just a blur.

She said: "I just blanked it out.

"It wasn't until I came home and had time to think about what had happened.

"I was so frightened I was going to lose her."

Miraculously, Gracie went back on a ventilator and fought back.

After three months months in hospital she came home with the assistance of oxygen.

Amy said: "She seemed to pick up and her organs started working again."

Gracie spent more than six weeks in hospital, celebrating her first birthday there on September 14 there before coming home a few days later.

Her mobility is poor and she will need future surgery and still uses a feeding tube for drinking.

But Janette says she is a joy to all the family and is doing well at Hillend Nursery.

She said: "She's amazing considering everything she's been through, she's been so brave."

Amy juggles looking after Gracie with her access to nursing course at West College Scotland at the Waterfront Campus and she hopes to go to university.

She said: "I feel blessed that Amy is still here.

"She loves her cuddles and playing with Woody and Jess from Toy Story, her dolls and our dog Bella.

"She's brilliant. She's going to spend another year at nursery and we hope she will go to mainstream school."