'I didn't know what to expect': Dublin mum on her 18-month-old daughter's heart surgery

Aoife Tobin from Dublin spoke about the ‘longest 24 hours’ of her life when her daughter Ellie Lyons had heart surgery at CHI Crumlin when she was just 18-months-old.

“Ellie was two weeks old when we went for a regular check-up with my GP. My GP realised she had a heart murmur and said we’d need to get her checked to make sure everything was OK. We went for some tests and got transferred from The Coombe to Our Lady’s Children’s Hospital, Crumlin where we found out Ellie had a condition called Pulmonary Stenosis – a restriction of blood flow in the heart.

"Ellie’s heart was pumping extra hard to get blood around her body. They asked me if she had other symptoms like sweating, breathlessness, blue lips or looked very pale, and we recognised those symptoms. She was my first and only child so I didn’t really know what to expect," the mum said.

“We had routine visits with the cardiac team in Crumlin and during one of these visits when she was six months old we found out she also had a hole in her heart. We needed to build her up for surgery and when she was 18 months she was brought in for surgery. They were hoping to go in through the groin so she wouldn’t need open heart surgery. I was feeling OK up to the point when she was put under anaesthetic and when she went to sleep she looked so tiny, I was very emotional," Aoife shared.

She explained that the doctors implanted a device in her heart and the muscle has grown over it so she’ll have that for the rest of her life. The blood is pumping properly now and her heart doesn’t need to work as hard. "When she had her surgery we were warned that there would be a lot of wires and she’d be very groggy afterwards, so we prepared ourselves."

Aoife made sure her partner, Robert, was ready because he’s just crazy about his little princess: "I knew how difficult it would be for both of us to see her like that – with low energy, surrounded by machines and wires. When we walked in to see her we were shocked because she was sitting up in the bed saying ‘hi mama’. She had her little dressing gown on her, eating a biscuit, just after serious heart surgery."

“There was a chance that we would get to take her home that very day because she was doing so well, but before we could, Ellie had an arterial bleed. I was trying to comfort her and hold up her dad who was in shock. But I knew she was on blood thinners and that’s why she was bleeding so much. She stayed in hospital for 24 hours, although it was the longest 24 hours of my life, and then we went home. For a year after the surgery she was on blood thinners and tablets to stop her having a heart attack. Six of us in my family were trained to give her heart medication."

“Four years later, I can’t believe Ellie has started school,” Aoife said. “When you’re in the hospital with your child you can’t imagine making it to this moment when she’s in her little school uniform and heading off for her first day in big school. It was amazing watching her walk through the gates and think, we did it. We made it here."

“Ellie has ongoing visits to Crumlin for the Pulmonary Stenosis. Her heart is doing so well that she only needs to go every year for appointments. She’s come on so well, she’s absolutely thrived! Ellie will be more active now that she’s started school and she’ll be running around with her friends. We don’t know when or if she’ll need surgery again, so it’s a relief to know the hospital are keeping a close eye on her," Aoife shared/

"She loves visiting the cardiac team in the hospital. She tells everyone she has a special heart. Ellie was so excited to start school and had such a great first day. She wanted to know why she wasn’t going to school at the weekend, she just loved it so much. Sometimes I just watch her running around and I can feel my chest swell with pride. She’s just incredible. She really is!” the mum gushed.