Today marks the start of a global awareness week to educate parents about congenital heart defects. SNJ reporter Hayley Mortimer speaks to Lisa Halliday whose daughter Lily was born with a genetic disorder called DiGeorge Syndrome.
WHEN Lily was born her parents Lisa Halliday and James Forsyth were already concerned about her low weight - but at just two days old doctors discovered that she also had three holes in her heart and needed open-heart surgery.
What followed was an agonising month for the family as Lily recovered in hospital after being diagnosed with a condition which will continue to affect her as she grows up.
Since Lily's open-heart surgery at just a few weeks old, her parents, who are now both full-time carers, have been advocates and fundraisers for congenital heart disorder (CHD) charities.
Lisa, 40, of Paganhill, said: "We just want to raise awareness because for a lot of babies the problems are not picked up at birth and many end up being rushed to hospital when they a bit older and all to often it can be too late."
Lily, was born by caesarean section on May 17, 2011 weighing just 5lb 14oz.
Nurses at Gloucestershire Royal Hospital noticed she was having problems feeding and transferred her to the hospital's special care baby unit where she was fed through a tube.
At two days old, doctors discovered that Lily had three holes in her heart and her aortic valve was smaller than normal, so she was rushed to Bristol ChildrenÕs Hospital for the heart operation.
"It was an extremely stressful and worrying time for us but staff at the hospital were very helpful and re-assured us that Lily was stable and getting stronger," said Lisa, who also has 18-year-old son, Eden.
After a few complications and the diagnosis of DiGeorge Syndrome, Lily was discharged from hospital.
The syndrome will have an impact on Lily for the rest of her life, with frequent visits to hospital because of her low immune system and constant medication for her feeding problems.
Doctors have since spotted another heart defect and a problem with the development of her left lung and both will require surgery in the near future.
She also has a problem with her sight and will need either surgery or special glasses when she is older.
But Lisa said that in the last six months Lily has progressed dramatically.
She said: "As for the future, we have no idea what it will hold for her, but we just hope her heart holds stable."
CHD awareness week runs from February 7 to 14.
For more information go to www.maxappeal.org.uk