CHILDREN and staff at Royal Wootton Bassett Infants School dressed all in red on Friday for the British Heart Foundation’s Ramp up the Red campaign.

The event also marked the start Congenital Heart Defects(CHD) Awareness Week, which runs until February 14, and children spent the day learning about the heart and the importance of keeping it healthy.

Niky Philpott’s daughter, Lori Weeks, who attends the school, was born with a complex heart condition including a hole in her heart and no pulmonary artery which is needed to supply oxygen to the lungs.

As a result her oxygen levels are much lower than they should be, and the six-year-old has had to undergo four major open heart operations and many minor ones since she was born.

Niky said: “We found out at our 20-weeks scan, and that day our lives changed forever. Like many first pregnancies, we had gone expecting them to check our babies’ health, but we were more excited to know if we were having twin girls or boys.

“We soon realised that gender was not important. We were devastated, angry, anxious, confused.”

Niky felt lucky that she was one of only a handful of parents who could prepare for this, since many CHDs go undetected before birth, lessening the child’s chances of survival.

She said: “Many don’t get this for whatever reason, and the heart defect goes unnoticed until the baby is extremely poorly or in a lot of cases dies. If parents had more knowledge about CHD then they would be able to attend the scan knowing what questions to ask about their babies heart.”

Lori will have to continue to undergo surgery throughout her life in order to keep her alive.

Niky said: “Lori’s heart cannot be corrected, that is, made to work like a normal heart, but it can be improved. Her condition requires continuous surgery throughout her life.

“She is having minor surgery again at the end of this month, and open heart surgery is planned for this summer. It’s all to help her to survive childhood.”

Two years ago, Lori suffered further complications after contracting myocarditis, which caused her heart to fail.

A third of people die after developing this, and another third have to live on medication for the rest of their life.

Niky said: “For two weeks we didn’t know if she would make it. We were told by her forever optimistic cardiologist that he just didn’t know if she would survive.

“Her heart condition was something we planned for and understood, but this was completely unexpected and something we knew nothing about.

“But she didn’t die. She does, however, need medication to keep her alive, and with this on top of her CHD it makes her future very uncertain.”

To find out more about Congenital Heart Defects Awareness Week visit chd-awareness-week-2013.