Baby with half a heart continues to live

UK:  As Donna Forrest puts another photograph into her daughter's memory box, she knows one day it will be all she has to remember her by.

Little Lilly-Anna Forrest was born with half a heart, a rare condition which means she is unlikely to reach adulthood.

The condition, hypoplastic left heart syndrome, means half little Lilly-Anna's heart does not pump blood to the body, making the right side must work even harder.

And since the family was given the devastating diagnosis, Donna, from Preston, Lancashire, has been creating a memory box for her daughter to help explain her condition as she gets older, and remember her daughter when she is gone.

Former retail worker Donna, 25, said: "At first all I did was cry and cry; now she is here I am positive all the time.

"As a new mum you don't think you are going to be talking about funeral plans.

"I keep absolutely everything and take photos every day. I want to be able to show her it all when she's older and starts to ask questions.

"One day she is going to find out and read up and ask me 'am I going to die?'

"I always think 'what will I do when that day comes?' I don't know what I will do."

Lilly-Anna was diagnosed with a potential condition at Donna's 12 week scan.

At first doctors thought the fluid around her head and neck was because she had Downs Syndrome, but further tests at Manchester Children's Hospital revealed it was problem with her heart.

Doctors were ready as soon as Lilly-Anna was born and she was whisked to the special care baby unit.

She has already undergone two major operations and had her chest opened eight times.

Donna said: "She looks just like a normal baby, he is very happy, always smiling and laughing.

"But she won't be able to do things like PE when she goes to school and she will have to have a strict diet.

"Initially when she came home she was very blue looking. Now unless you saw the scars you wouldn't be able to tell that she was poorly.

"A lady in the supermarket even told me how healthy she looked."

Lilly-Anna is being treated at Alder Hey Children's Hospital in Liverpool and the Royal Manchester Children's Hospital.

She will have to have another operation aged between three and seven.

Donna said: "Her condition is so severe I won't leave her side. She could have heart failure or a cardiac arrest in the night.

"I have had some training with the hospital so that if something did happen, I would know what to do."

"I have to take each day as it comes because I never know what is around the corner," she continued.

"So far we have been lucky though and since she came home from hospital she has only been back as an emergency once.

"When we were in Alder Hey there was another baby with the same condition as Lilly-Anna. She did not make it and it made us realize just how lucky we are.

"There are so many babies there for different things and all the parents support each other through it."

Donna and Lilly-Anna's father, Michael Cottam, 31, a chef, are now fundraising for Alder Hey and the British Heart Foundation, starting with a sponsored walk.

Donna said: "It's about raising more awareness. Some of the children with this condition are in pushchairs aged three or four; they can't walk very far.

They are very poorly. We want to raise money for research to find a cure."