A woman saved her grandson’s life when she diagnosed him with heart failure - all because she heard him breathing strangely on Skype.
Adrian Livingstone, 34, and his wife Candace, 31, were having a video chat with his mother-in-law Elizabeth Maeser when she noticed their son Elliott was breathing unusually. She recommended they take him straight to hospital.
The next day his condition worsened and Elliott was subsequently diagnosed as suffering from dilated cardiomyopathy, a disease where heart muscles become stretched and thin.
Elliot, now 18 months old, spent seven hours in surgery where he was fitted a Berlin heart, a device which pumps blood from outside the body to allow patients time to find donor hearts, becoming one of the youngest people in UK to receive one.
Elliot in hospital
Though he can stay on the mechanical heart indefinitely, the current UK record for survival is 251 days – just over eight months.
As Elliott had his fitted almost five months ago, he facing a race against time to get a transplant.
“Elliott is on the UK and European wait list for a heart transplant,” said Mr Livingstone, who works in engineering.
“We have to keep our phones on at all times in case the call comes through saying they’ve found a match. Every night before bed we think to ourselves, ‘Could this be the night?’
“We’re quite glass-half-full people so we look on it as exciting, rather than scary. Because there’s no certainty when waiting for a transplant, we’ve taught Elliott to live in the now and take each day as it comes. It’s quite a refreshing way to think.”
Despite no complications throughout Mrs Livingstone’s pregnancy and labour, a routine scan 10 days after Elliott was born showed he had gained an unusual amount of weight.
Then, during a Skype call two days later, Mrs Livingstone’s mother noticed Elliott “sucking in” whilst breathing, as if struggling for air.
His father said: “When we got to hospital, Elliott was right on the brink, and then his health just went downhill.
“His little body went into shock, something which is known as neonatal collapse, and he was fighting for his life.”
Elliott was transferred by ambulance to the intensive care ward of Evelina Children’s Hospital in central London, where medics pumped him full of drugs in a bid to save him.
Slowly, his condition improved, but when he came off the drugs and his health rapidly declined once again, doctors decided to run an echocardiogram test which revealed the left side of Elliott’s heart was enlarged.
He was then diagnosed with dilated cardiomyopathy, a life-threatening genetic condition that can, in severe cases, cause sudden cardiac arrest.
“The doctors said Elliott’s heart is beating so fast it’s like he’s running a marathon for every second of every day,” said Mr Livingstone. “The left ventricle in his heart is stretched and weak, which means he can’t pump blood efficiently round his body.”
For a year after diagnosis, Elliott was relatively well, only being hospitalised once.
Then, in December 2014, he became gravely ill with complete heart block, meaning the electrical pulses which usually make the heart contract had stopped working.
He had a pacemaker fitted and spent two weeks in Evelina Hospital recovering.
“For a week after the pacemaker was fitted, Elliott was up and about. He’d never had much of an appetite before but suddenly, he was eating really well,” said Mr Livingstone, of Basingstoke.
“We hoped we’d finally found a solution, but then he stopped running around playing and would tire more easily.”
In February this year, the family were referred to Great Ormond Street Hospital for a transplant assessment.
Elliot with dad, Adrian
Within five days, the toddler’s heart had failed completely as he was fitted with the Berlin heart.
Because the size of the machine makes it so difficult to transport, Elliott is unable to leave hospital, save for the occasional trip to nearby Starbucks or Pizza Express with his parents and a nurse, who carries a back up battery supply for the Berlin heart.
Now, the family face a tense wait to see if a donor becomes available.
They have not been given a timescale, but say that an eight to 12 month wait for a transplant is not uncommon.
Elliott would be able to receive a heart from somebody up to the weight of 30kg, the equivalent of a five or six-year-old.
The Livingstones are sharing their story ahead of Jeans for Genes day, which fundraises for a range of initiatives aimed at improving the lives of those coping with genetic disorders.
“Elliott’s final deterioration was so sudden that we’ve had no choice but to face up to it and cope as best we could,” said Mr Livingstone.
“Our focus must be on Elliott. We don’t have enough energy and time to waste on being angry, dejected or depressed. You just have to get on with the hand that’s dealt to you.
“He is in the best hands at Great Ormond Street, but our hopes are all pinned on the transplant so that Elliott can get back to health and we can go home together as a family and watch him live a full and happy life.”
Laura Pattison Campaign Director at Jeans for Genes Day says: “Elliott’s story highlights the struggles which many families face when their child suffers from an extremely rare genetic disorder.
“We are delighted that the funds raised from this year’s Jeans for Genes Day can help to improve the lives and provide a vital lifeline for other families in a similar situation.”
Jeans for Genes Day is on Friday 18th September, sign up at jeansforgenesday.org.
