CHURCH Gresley mother-of-four Hazel Hensley knew something wasn’t quite right following the birth of her third child.
She noticed differences between baby Lara compared to when her two older children had been babies. Lara’s breathing was rapid, she would sweat excessively and would not sleep.
A worried Hazel took Lara to the doctors were she was told there was nothing wrong. It was only after she insisted on an appointment with a paediatrician that it was discovered that Lara, now 10, had a congenital heart defect.
To this day, Hazel insists that had she not had two children previously, she would not have known the difference and Lara may not be here today.
Speaking to the Mail ahead of Congenital Heart Defect Awareness Week next week, she said: “Most issues are picked up when you are pregnant and when the baby is born. I thought something was not quite right because she wouldn’t sleep, lost weight and was sweating. If she had been my first she would have died because I would have thought it was normal.
“I Googled heart defects and brain tumours, then took her to the doctor who said there was nothing wrong. I was told I would have to wait 19 weeks to see a paediatrician.”
After making constant phone calls Hazel managed to see the paediatrician sooner than the 19 weeks. He diagnosed that there were two large holes in Lara’s heart. The defect – transposition of the great arteries – meant that two parts of the arteries in her heart were the wrong way round.
Lara, a student at Pennine Way Junior School, ended up at the Glenfield Hospital in Leicester.
“She went into heart failure straight away’, said Hazel, who has two older sons, and a younger daughter, ‘but with Lara being Lara she had a very complex artery system, so they did an operation called the ‘mustard procedure’ to re-direct the blood flow. Now her heart works the wrong way round.”
Lara has undergone four open heart surgeries in her life, including three major operations in five days.
She will be put on the transplant list when she is an adult. Hazel said: “After she had the last operation I didn’t think she was going to make it.
“If she sleeps longer in the morning I don’t know if she’s still alive.”
To look at Lara now, you would not know she was living with a heart defect.
“Most heart babies tend to be pale,’ said Hazel, ‘you would never know by looking at Lara that she has had four open heart surgeries.
“She goes swimming and does other sport every week such as snowboarding and mountain biking. I think that’s why she’s as healthy as she is – she has such a positive attitude.
“She is hardly ever ill, the condition doesn’t seem to affect her.
“Too many parents are scared to get their kids to exercise – a lot of people that have a heart child dare not have another child but there is no reason why you can’t have another one.”
Congenital Heart Disease is considered to be the most common birth defect, and is a leading cause of birth-defect related deaths worldwide – one in 100 children are diagnosed with a heart defect.
Despite this, Hazel feels more should be done to spot the signs from birth, or during pregnancy. She said: “When you go for your first scan at 20 weeks you should be able to find out ‘is the heart rate normal?’ ‘is the function normal?’
“Signs to look out for include excessive sweating, extreme tiredness, and rapid and shortness of breath. Lara would not feed very well and had a bluish tint to her skin.”
She added that a simple test called ‘oximetry’ could help detect heart defects. It involves a device being put on the baby’s finger to detect the level of oxygen in the blood.
Ahead of Congenital Heart Defect Awareness Week, Lara’s friends at Waves Swim School in Swadlincote donned red caps for their latest lesson on Saturday to help raise its profile.
Hazel also attends Patches Heart Support Group, which helps parents of children with heart defects.
More information can be found patchesheartgroup.webs.com