Making the best of life with congenital heart disease

A Mullagh based family, whose world was turned upside down when their baby was diagnosed with congenital heart disease, have been living in the moment since finding out. The parents of Eddie Foley (4) received the diagnosis when their little boy was only 17 months old.

“He was born a very happy and healthy baby, he ate really well, he never really got sick at all,” says his doting dad, Darren.

All seemed well: “He was a chubby little baby. You look back at photos and he was really happy and not a sickly baby.”

When Eddie was ten months old, his parents brought him to the GP with what they suspected was just croup. When the doctor was listening to his heart, she noticed a “murmur”. She sent the family to the regional hospital who, in turn, referred Eddie to Crumlin’s Children Hospital to assess what was causing the murmur.

Little did dad Darren and mum Emma know this appointment would turn their lives upside down.

“That’s pretty much when our lives changed. One of the things that sticks out in my mind from meeting the Cardiologist was him saying ‘I usually get to say that this is innocent but, unfortunately, in this case, that’s not the answer.’”

“In the blink of an eye that’s when life changed for us forever,” continued Darren.

Ultrasounds revealed that Eddie had major obstructions in his heart.

“The technical term is Metrostenosis, Aortic Stenosis, and Subaortic Stenosis, which ultimately were all on the left side of his heart.

“Upon further investigation, doctors detected another defect called a Supramitral Membrane, which is basically a little shelf that sticks out and causes more turbulence in his heart.”

These diagnoses grouped together are called Shone’s Complex, due to each condition being located on the left side of his heart.

“Shones is extremely rare, it accounts for less than one per cent of all congenital heart diseases, so it was quite a shock to us.”

Eddie was diagnosed with this condition in July 2019 following seven months of hospital appointments. By September, the 17 month old underwent open heart surgery.

“They performed a procedure called Kono, that basically was to modify the valves so they could open a little bit easier and clear away some blockages in his heart,” explained Darren.

Once the operation was complete, doctors informed Darren and Emma that Eddie’s heart wasn’t able to pace itself.

“Because of the size of the surgery that they did, they had to cut through the main pathways where your heart receives the signals [from the brain] to tell it how to beat. So he ended up with a thing called Complete Branch Block. That meant his heart didn’t know how to beat properly.”

Eddie was immediately hooked up to machines, which helped regulate his heart beat, as well as drainage tubes. Five days later, it was confirmed that he would need a pacemaker.

The family didn’t hesitate and Eddie had a second surgery to install the pacemaker into his abdomen, which was completed successfully.

“You can still feel the pacemaker in his tummy now, years later. You can actually see it if he stretches back, you can see the pacemaker protruding from his tummy.”

While this operation took Eddie out of the woods for a while, his parents are well aware he will require many more surgeries in the future.

“With these surgeries it’s really about giving you more time, there’s no fix for CHD. You kick the can down the road, which is not a very nice way of putting it, but it’s just that we will do this for now and then, when it deteriorates, we’ll do another procedure and then another procedure. So he has a life of procedures ahead of him effectively.”

Since his operation, Eddie is required to attend hospital appointments regularly to monitor his condition.

“He’s in every three months for follow-up cardiology screens, pacemaker checks every six months. So those three-monthly cycles are an interesting thing from a stress level perspective, you never know what you’re facing when you go into those. You never know if it’s a case of, his surgery needs to be now. It’s very much what they see on the day. Deterioration can happen quickly so it’s not a case of - he was fine three months ago, he’ll be fine today,” revealed Darren of the rollercoaster journey.

“You get some respite once you get a nod that ‘he’s doing okay’, ‘surgery isn’t on the cards right now’. You get maybe six weeks of - ‘okay he’s good’ and then you’re back into the cycle of he’s back in six weeks and you start worrying.”

The lives of Eddie, his parents and his two older sisters, Toiréasa (11) and Willow (9) changed forever after his diagnosis, but they are determined not to let it get them down.

Taking a breath before continuing, Darren said: “Your life flips upside down.You carry on, you just make it happen. You change how you face life. We very much now live for the moment, enjoy the time that we have. We get out every weekend that we can and get away and make memories. You almost stop thinking about the long term and just focus on the here and now and enjoy life.”

The proud father describes his son as being a “happy little guy”.

“He’s a tough little nut. He’s kind hearted, loving, adorable, and strangely enough a happy young man. He’s strangely obsessed with things like monster trucks and hot wheels and supercars. He’s big into his motors.

“He never really complains. At times you wonder, is he really only four? I suppose it’s a lot to do with what he’s gone through, his courage is immense. He’s used to going to the hospital obviously and he doesn’t whimper about it, he just gets on with it, which is really phenomenal for a four year old to be honest.”

While he seems like a healthy little boy from those looking from the outside, his family are painfully aware this is not the case, and refer to him as “stable” when friends or family ask how he is.

“He tires easily, he doesn’t really regulate his body temperature very well. A regular kid could be outside in 12 degrees and be happy out whereas Eddie uses gloves, scarf, hat. He goes from being warm to very cold very quickly, particularly on the extremities so his hands and feet.

“He can’t do contact sports in his life, which living in the country is a difficult thing, particularly it being such a GAA focused life and things like that.

“There’s a direct correlation between CHD and depression and anxiety so that’s something that he’s going to have to deal with and we’ll deal with, with him over his life - a lifetime of surgeries, constantly waiting for that next surgery to happen.”

Eddie’s family are now focused on living their lives to the fullest.

“He loves getting away. We have a campervan we bought in the last couple of year. A lot of it was because of his situation. He loves things like going to Kilkenny and going to the parks or going up to Donegal to the beaches and things like that. He loves getting out and about, he’s very adventurous.”

The boy’s family are determined to spread awareness of his condition.

“One in 100 babies are born with CHD,” continued Darren.

“Congenital heart defects are the number one cause of birth-related deaths, more children die from CHD each year than all forms of childhood cancer combined.”