A mum has today spoken of her shock at how her baby girl was born with a half a heart.
Donna Forrest’s little girl Lily-Anna was born in September last year and has a rare heart condition called Hypoplastic left heart syndrome.
Doctors say it is unlikely Lily-Anna will live into adulthood but Donna, 25, said she now wants to raise awareness and funds for research to ensure other families don’t have to suffer.
The condition means only half of the baby’s heart is working. The left side of the heart can’t effectively pump blood to the body, so the right side of the heart must pump blood both to the lungs and to the rest of the body.
Donna, from Ashton, Preston, said: “At first all I did was cry and cry; now she is here I am positive all the time.”
Lily-Anna has already undergone two major operations and will face more procedures as she gets older.
She has been treated at Alder Hey Children’s Hospital and the Royal Manchester Children’s Hospital.
“She looks like a normal baby,” said Donna who previously worked in retail, “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.
“She has to have another operation at three and at seven.”
The condition means the youngster could only live to until her later teen years or her early 20s.
Donna said: “Initially when she came home she was very blue looking. Now unless you saw the scars you wouldn’t be able to tell.
“She is very happy, always smiling and laughing.”
But Donna admits the time limit on Lily-Anna’s life is frightening.
She said: “I always think ‘what will I do when that day comes?’ I don’t know what I will do.
“As a new mum you don’t think you are going to be talking about funeral plans.
“One day she is going to find out and read up and ask me ‘am I going to die?’
Lily-Anna’s condition so so severe that Donna does not 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 always got her with me.”
Donna and Lily Anna’s father, Michael Cottam, 31, are now fundraising for Alder Hey Children’s Hospital 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.
l To find out about their fundraising efforts or to donate to the charity walk, visit www.justgiving.com/Michaela-Tymon.