A toddler has been fitted with a pacemaker to stop her passing out – every time she is told off.
Ava Fenton, two, suffers from a rare condition which causes her heart to stop beating every time she is in pain or cries.
She first passed out when she was six-months-old and she nearly died aged nine months when she had a six-minute seizure.
At first baffled doctors thought Ava was just holding her breath during temper tantrums.
But she was eventually diagnosed with reflex anoxic seizures – where extreme emotions can make her heart and breathing stop temporarily.
Any emotion strong enough to make her cry – including fear, upset, anger and pain – cuts the blood supply to her brain and makes her pass out.
At its worst medics feared she could die if her heart and breathing could not be started again.
The terrifying condition meant Ava could never be left alone by her mother Natalie Fenton, 38, to play with other youngsters.
Her mum and dad Paul, 34, were forced to maintain her happy mood with constant attention.
They could never let her get too tired or hungry – and had to be careful about telling her off, in case it sparked an episode.
Natalie was too terrified to leave Ava unattended for 17 months and would not even dare leave the room to even to make a cup of tea without taking her.
She says the smallest thing can set off an episode from leaving her alone in a room, to somebody taking food off her – or even from falling over and hurting herself.
The horror of Ava’s condition was captured on a shocking home video which shows Ava lying on her back with her arms above her head before she suddenly stops crying – and passes out.
Incredibly, doctors have now managed to bring Ava’s condition under control by fitting the tot with a pacemaker, which stops her heart dropping below 80 beats a minute.
The family say the pacemaker has become their “safety net” although it has not cured the condition completely and Ava still suffers up to two seizures a day.
Natalie and Paul Fenton yesterday (Fri) said they had to “pick our battles” as telling Ava off would cause her to have an episode.
She said: “When it first happened I was completely shocked. Ava looked like she was dead. You do not expect your daughter to pass out.
“We did not want to be parents who mollycoddle their children – but we had to become like that pretty quickly.
“It was really hard to discipline Ava. We had to work out a way to tell her off without making her really upset. For a young child that is really hard.
“We had to pick out battles. We only told her off when she did something that was dangerous, for example playing behind the television near the electric cables.
“We always had a real feeling of guilt afterward as we knew she would pass out. We often used distraction techniques.
“It taught us to teach her right from wrong without having a go at her. Now we find Ava is a very good negotiator.”
She added: “Without the pacemaker she probably wouldn’t be with us now.
“The pacemaker is not a guarantee, but we could not have lived without having it. It is such a relief to have it. It’s given us real peace of mind.”
Natalie, from Burwell, Cambs., gave birth to Ava five weeks early on March 2, 2010, and doctors said she was a healthy little girl.
But in August 2010, when Ava was just six months old, her heart stopped beating and she passed out after she fell and hit her head.
Ava started crying and then she suddenly fell silent, turned completely white and appeared to have stopped breathing.
Natalie, a midwife, put Ava on her side and rubbed and patted her back while Paul called 999 and eventually she started crying again and her colour came back.
Doctors told Natalie and Paul that Ava was just holding her breath which babies and toddlers commonly do.
But Natalie feared there was something more serious wrong with her and it could not be put down to temper tantrums.
The seizures became more frequent until May 2011, when the tot had a 20 minute fit – and was left struggling to breathe.
By the time the ambulance arrived and she was taken to hospital Ava had been having a seizure for 20 minutes and Natalie and Paul were convinced she was going to die.
Doctors managed to resuscitate her and decided she needed a pacemaker, which was fitted at Great Ormond Street Hospital, London, on June 29, 2011.
Ava still has reflex anoxic seizures and has at least two seizures a day, but the pacemaker controls it and stops her passing out.
Ava’s Reflex anoxic seizures (RAS) are caused by any unexpected pain, shock or fright because she has an overactive vagus nerve in her brain, which controls the heart and lungs.
It means the onset of a sudden strong emotion causes a lack of blood in the brain and the youngster temporarily stops breathing and loses consciousness.
As many as one in every thousand children and young people suffer from some form of RAS, but it is rarely as sever as Ava’s condition.
Dr Alessandro Giardini, consultant paediatric cardiologist at Great Ormond Street Hospital, said: “Reflex anoxic seizures is a relatively common condition. But Ava’s case was very extreme.
“The episodes are triggered by emotions like stress, pain or if a child gets upset. The heart rate slows down very much to the point where children cannot maintain their blood pressure.
“It is mainly a benign condition and children often grow out of it.
“Very rarely if the heart slows down very much and there is a long pause in the heart beating then we need to fit a pacemaker.”
