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by Katie Alston
kalston@thekmgroup.co.uk
The mother of a baby battling a heart condition has spoken of her experiences in a bid to raise awareness and help other parents.
Hendrix Danger Mackay was born on April 19, 2010, the fourth child for Louise Mackay and her husband Matt.
Two weeks after he was born he began struggling to feed with Louise, 31, and two weeks later the family’s GP heard a noise on his chest and referred him to the QEQM Hospital in Margate.
Louise, who lives in Littlebourne, said: “He was linked up to all sorts of machines and I felt my first rush of fear.
“The doctor said he could hear a murmur and an x-ray showed that our beautiful five-week-old son had a swollen heart.
“I was devastated, but didn’t really understand the sheer danger that Hendrix was in.
“Little did we know when we named our baby Hendrix Danger his life would literally be in danger.”
Doctors then sent the family to London to have an specialist echo scan.
Louise said: “I couldn’t believe my ears. You think London is a place they send people when they are really sick, because they can’t treat them locally.
“I sobbed and just felt utter despair.
“I felt like they had made a mistake, it was all a bad dream and we were just wasting everybody’s time.”
Hendrix deteriorated over the next couple of days and was taken by ambulance to the Evelina children’s unit at Guy’s and St Thomas’ hospital in Westminster, where doctors diagnosed him with a heart condition called severe Aortic Stenosis.
He had to undergo life-saving surgery so a balloon could be inflated to increase the size of his aortic valve.
Following the operation Hendrix was struggling to breathe and doctors feared he may have suffered brain damage.
Louise and fencer Matt were given a room on the floor below their son and allowed to visit him throughout the night to hold his hand.
After four days Hendrix was taken off the ventilator, and was allowed to return home two weeks later.
The family have been up and down to the hospital throughout the past year so Hendrix could have more surgery.
On Monday he had a Transoesophageal Echocardiogram, where a probe is used to take a sonogram and assess the heart’s condition.
Louise added: “It has been a living hell, quite easily the worse time of both mine and Matt’s life.
“With three healthy children you never imagine in a million years your fourth would suffer with a congenital heart condition.
“The doctors and nurses have been a fantastic support and meeting other parents on the ward has also been a comfort.
“Without our friends and family being as caring and helpful as they have been things would have been unimaginably worse.
“Having to see your baby go through open heart surgery has been devastating but with the right treatment and Hendrix knowing his boundaries he should be able to live a normal life, albeit with several more operations along the way.
“We never knew that congenial heart conditions were as common as they are and just wish that from reading our story, people will be encouraged to donate all they can to charities to help children in similar situations as Hendrix.”
