'Healing hearts and minds' aims to plug support for heart patients

Both have endured countless, complex corrective surgeries and procedures in Scotland and in the United States. 

At one point babies born with congenital heart disease (CHD) were not expected to live into adulthood.

With treatment advances and care, the outlook is much improved but adults require lifelong monitoring and care.

Psychological support to cope with what is often an uncertain prognosis is also still lacking, they say, despite the fact heart complications are one of the most common birth defects affecting around one in 150.

Ms Livecchi recalls being sent a children's play therapist when she was struggling to cope with her fourth surgery in a year at the age of 30.

The pair realised there was an opportunity to do something and despite not having met they have co-authored a book - Healing Hearts and Minds - which they hope will help plug a gap in support.

"I think back to my experience as a patient and think how much I needed this," says Ms Livecchi, who lives in Connecticut, "and there was nothing out there."

READ MORE: Exercise 'beneficial' for patients previously warned of risks 

Dr Morton, who works as a counselling psychologist and lectures in the academic field at Glasgow Caledonian University, was born in 1978 with complete heart block, where there is a problem with the electrical system of the heart. The condition affects one in every 20,000 babies.

She was transferred to Yorkhill hospital soon after birth and her parents were told she might not survive. 

"They thought I was going to die anyway, so they decided they would try to fit an external pacemaker when I was four days old. That was a world first at the time," she says.

"They wanted to put it on the news but my dad said no because he didn't want me to grow up with that label.

She has depended on a pacemaker ever since and is now on her 11th.

"This was the early 1980s and they didn't know about the psychological impact so there was no support," she says.

"My mum did her absolute best but wasn't allowed to come with me to theatre.

"I just remember feeling really poorly," she says. 

The pacemakers were set at a certain level so she was limited physically and school gym classes were out. 

READ MORE: Simple blood test could protect thousands at risk of catastrophic heart condition 

"There was always this sense of being dependent on this thing and if it breaks you might die," she says, recalling sitting an exam with a heart monitor attached and being taken straight for surgery afterwards.

The 44-year-old, who lives in Larbert with husband Craig and teenage son Dylan, says that CHD can fall under the radar a bit because patients with very serious conditions look well.

"You get that a lot of the time," she says. "You either overcompensate to be normal or fit in so you don't really talk about it or go down the route of saying, there's something seriously wrong with me which risks you being marginalised.

"I guess there is a lot of denial and I certainly did that."

She says she didn't really embrace the fact that she had a heart condition until her late 30s after "some really good therapy",

Her co-author was born with Transposition of the Great Arteries, a serious, rare heart problem in which the two main arteries leaving the heart are reversed.

She was one of the first babies to have a life-saving corrective called the Mustard Procedure, named after the surgeon who developed it. Up until the late 1950s, the condition was commonly fatal.

READ MORE: 'Life-changing' heart procedure available to Scots after ten-year funding battle 

"When I had my fourth surgery, I was really emotional and they kept trying to give me medication and there is nothing wrong with medication but I remember saying 'can't I just talk to somebody?'" she recalls.

"I just want some emotional support and they didn't have anyone." She says they eventually sent someone from the children's play therapy room,  - she was 30 at the time - and later a counsellor from the oncology department.

She is now a therapist and her work includes supporting people with congenital heart conditions. She says there is a lot more support for people affected by other health conditions and illnesses.

"I'm still coming across people who don't have anyone for people to speak to and that's one of the reasons why I wanted to write this book," said Ms Livecchi who became aware of her co-author after reading online about a photographic exhibition she was involved in where patients bared their scars from open heart surgery.

The ScarredFORlife exhibition was launched at Kelvingrove Art Gallery in Glasgow in February 2015 and was later staged at the Scottish Parliament.

The book includes case studies from patients all over the world and advice for parents and healthcare providers on how to prepare patients for the psychological impact of a lifelong condition.

The Golden Jubilee Hospital, in Clydebank, which houses Scotland's specialist centre for adults with CHD, now has one psychologist to provide support to patients.

"We are medically quite a new population," said Dr Morton. 

"Survival has increased by 75% in the last half-century. It's quite unusual to live on medical treatment from cradle to grave.

"We wanted to provide hope and connection with other people to show this is a community and we wanted to validate a normal response to unusually difficult life events, rather than pathologising them.

"I've spoken to a lot of people who felt that in addition to having a heart condition they felt like they had a mental health condition so that link hasn't been made.

"We know so much more about trauma but a lot of that hasn't been translated into medical trauma. 

"There's a lot of support for other health conditions so we wanted to take some of that so that people can live as full a life as possible."

For advice and support about CHD go to sfhearts.org.uk