Thursday 21 March 2019

'It was the longest day of my life' - Mum of Ellie (4) who underwent heart surgery

Ellie Lyons
Ellie Lyons
Ellie Lyons
Independent.ie Newsdesk

Independent.ie Newsdesk

A Dublin mum has spoken about the "longest 24 hours of her life" after her young daughter underwent heart surgery.

Aoife Tobin said her daughter Ellie Lyons was diagnosed with a heart condition at just two-weeks'-old and had to undergo surgery at Our Lady’s Children’s Hospital in Crumlin when she was 18-months'-old.

Ellie Lyons
Ellie Lyons

“Four years later, I can’t believe Ellie has started school," mum 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 was two-weeks'-old when doctors discovered she had a heart murmur during a regular check-up with a GP.

After some tests, Ellie was transferred from the Coombe to Our Lady’s Children’s Hospital, Crumlin where she was diagnosed with 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," Aoife said.

When Ellie was six-months'-old, doctors discovered that she had a hole in her heart and needed surgery.

"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.

"They 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.

"I made sure my 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."

Aoife said that Ellie was recovering well after the surgery but before they got a chance to bring her home, she suffered 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."

Ellie, who still regularly attends Crumlin for check-ups, is now doing well and thriving.

“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. 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."

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