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'Facing open-heart surgery left me with overwhelming fear'

Mum-of-four Lisa O'Sullivan Shaw was born with congenital heart disease. She shares her recent surgery experience with Liadan Hynes

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Former Miss Ireland Lisa O'Sullivan Shaw with her husband Jamie and their four boys - Callan (8), Dillon (6), Rian (5) and four-year-old Rhys. Photo: Fergal Phillips

Former Miss Ireland Lisa O'Sullivan Shaw with her husband Jamie and their four boys - Callan (8), Dillon (6), Rian (5) and four-year-old Rhys. Photo: Fergal Phillips

Fergal Phillips

Lisa says her confidence is starting to return

Lisa says her confidence is starting to return

Fergal Phillips

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Former Miss Ireland Lisa O'Sullivan Shaw with her husband Jamie and their four boys - Callan (8), Dillon (6), Rian (5) and four-year-old Rhys. Photo: Fergal Phillips

When Lisa O'Sullivan Shaw was born in Ballyduff, Kerry, in 1981, doctors knew immediately that something was wrong. The baby was taken immediately to hospital in Cork, then flown to Dublin. Her mother remembers one of the nurses telling her it would be better if her daughter, her first baby, went that night. "I would have presented as a blue baby, and they were telling my parents all sorts of things at that time. I was baptised that day," Lisa explains now. She had been born with congenital heart disease; pulmonary stenosis.

At six weeks, she had open heart surgery, a valvotomy, in which a tube was put in to open up a blocked valve. "My first home was Crumlin hospital, for the first three months," Lisa says now.

Growing up though, Lisa's health wasn't a major issue. "I had a pretty uneventful childhood medically. I was never treated as 'don't do this or don't do that' by my parents. It was very much 'get on with it'."

She began modelling at 14, continuing throughout school and college; Lisa studied business in Cork. Throughout her teens and into her twenties, Lisa was in a long-term relationship with a Kerry footballer, in 2002 she won Miss Ireland, and travelled to the Miss Universe pageant in Puerto Rico.

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Lisa says her confidence is starting to return

Lisa says her confidence is starting to return

Fergal Phillips

After her long-term relationship broke up, Lisa travelled to New York, for an adventure, she smiles now. She met her husband there, Irish man Jamie Shaw. The couple now live in Meath, with their four sons.

"I always wanted to have a family," Lisa explains. Shortly after their wedding, she was pregnant. "It wasn't until I was pregnant with my first child that the magnitude of having a heart condition first came into play. It was classed as a high-risk pregnancy."

She wasn't nervous during the pregnancy, she recalls now. "I think now that was naivety. Every time I had a baby, they would say the biggest test your heart could have is pregnancy, and it does so well."

There followed several years of what Lisa refers to with a smile as blissful motherhood. She was a stay-at-home mum, "four boys under four. It was really busy, but so enjoyable, I loved it." Then last year, she began feeling tired all the time. It didn't make sense. The family were moving out of the baby years; the boys' sleep was improving. After visiting her GP, she went for her annual check-up with her cardiac team. They instigated an investigation.

After extensive testing, it was discovered that the right side of her heart was enlarged and massively overworked, hence the tiredness. A valve replacement was deemed necessary. At first, it seemed as if it would be a relatively straightforward procedure through the groin. It quickly became clear though that the valve she needed was too large for this method and open-heart surgery would be necessary.

"That was the most overwhelming fear that I have ever felt," Lisa recalls now of getting the phone call with this devastating news. "It was like getting a punch in the stomach. Even now, it makes me emotional to think of it," she says welling up. Replacing her valve was something she had always imagined would happen when she was in her sixties, not she says, at the "early thirties, four babies stage".

She recalls finding it hard to put things in perspective. Her husband would tell her "you will get through this," but anxiety was taking over. "I had to go make my will. Things go through your head. 'Will I be here for their weddings?' Because with open heart, they're going to stop your heart for four hours. And my worry was 'what if they don't get it going, what happens?'"

In an effort to try to regain some kind of control, she recalls asking her surgeon to describe the procedure to her, down to the saw he would use. "I'm such an organised, routine-driven person, that I don't like not knowing what's happening. That's how I dealt with surgery. Nothing is going to be in your comfort zone, but I think you have to mentally bear down and be like 'right, next step'. You have to get over each hurdle. If you collapse at all, it all becomes too much."

Her biggest fear was that she would not wake up after the surgery. She had trained her husband to whisper repeatedly when she did wake, "It's OK, you're alive, it's OK, you're alive."

She woke, she says now, "into my nightmare." She was in pain all over, unable to move because her chest bone was broken and there was rib damage.

Everyone reacts differently, she points out. Her surgeon had warned her that this operation could be particularly challenging for people in their thirties and forties for whom it tended to be the first major road bump in life, and who would be likely to have small children.

"The breathing tube was still there, so I couldn't talk. But this calmness comes over you, and you think 'you're alive, you're here, and just calm down. We'll get through it, piece by piece'."

After a week, she could shuffle up and down the corridor. Inhaling was agonising, she recalls. "There was a weird feeling in my chest, as if if I moved to the right or left my whole chest plate would fall out."

It was now, in the aftermath, that the anxiety really ramped up, she recalls. "I had this sense of a physical clock over my head. And the clock was going tick, tick, tick; there's more life behind me than there is ahead of me." Her surgeon advised her not to let this experience rule her life. That she needed to give it time to process. That any operation to do with the heart always involved psychological repercussions.

"With your heart, it's your whole being," Lisa says now. "It's not like you broke your leg. It feels like a violation. It's a make or break situation."

She found herself beset by irrational worries, worrying about her life span, and fixating on wanting to go back to her old life. Lisa points out that more support for patients at this point to assist with the mental side of recovery, not just the physical recovery, would be helpful.

Lisa returned home after a week-and-a-half. "My husband was my carer for four months; he was out of work for all that time. He allowed me to have that focus to recover, did everything in the house. My job was to walk my driveway and take my tablets."

She remembers proudly how careful her boys were with their mother at this time. "My seven-year-old understood fully. You try to hide all the scary stuff. He turned to me before my operation and said 'I know mommy you're afraid you're going to die, but you're not going to die. You're going to be here'. My heart just sunk."

She had her first anxiety attack about a week after coming home from hospital. "I couldn't breathe properly and it just escalated. I couldn't catch my breath, I thought I was having a heart attack. My body was starting to jerk."

Time is the most helpful thing for dealing with these fears. "I would definitely say that I am a different person now. I have this fear of death at the back of my head that I would never have had.

"If someone talks about age, I have this anxiety flutter though me, thinking about when I'll need my next operation."

Two of her boys now suffer from separation anxiety and are fearful at times around bedtime. They ask their mother what if something happens to her when their father is out. "You're navigating through that, taking the fear from them," she reflects.

Her doctors and counsellors warned her "you will never be the same again but that's OK, it's a different you," and you get the sense this is something she is coming to terms with.

"When I look back, I was so angry, with God and everything; 'why is this happening to me?' But on the flipside, I'm so thankful that for me, my family life had worked out; that I had no complications in conceiving, I had my four babies. The anxiety is better now. That clock is still kind of there, but I try to push it away. The kids are at such a lovely stage, I'm trying to move forward with that."

Her confidence in her physical self is coming back. She works out again, although with some exceptions - no overhead weights.

She doesn't like driving in the dark now, something that was never a problem for her before the operation.

"I think the world initially becomes a scarier place. Take everything as a step. Know it will get better. The pain will go."

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