“I’m a miracle baby” – what it’s like to live with a congenital heart defect
“My heart works backwards to yours,” explains Noreen Heffernan from Nobber in Co Meath.
he 51-year-old Noreen is a miracle baby. She was born with transposition of the great arteries (TGA), a life-threatening congenital heart disease.
This occurs when the position of the main pulmonary artery and aorta are reversed or reversed, and as a result, the amount of oxygenated blood that can be pumped through the body is limited. Symptoms include slow weight gain, weak pulse, and cyanosis—a bluish tinge to the skin and lips.
“When I was born, I was classified as a ‘blue baby,'” she says.
Noreen was born on Holles Street in 1971. At the time there was no surgery in Ireland that she needed to survive.
So for the first year of her life she was treated with beta blockers and medication to regulate her heart rate and blood pressure.
Then, at 18 months, she was transferred to London’s Royal Brompton – Britain’s largest specialist heart and lung centre.
There she underwent a “mustard procedure”. This involves building a baffle, surgically created tunnel, or wall in the heart to redirect blood flow. It was an extensive operation.
“They literally split you open, crack your rib cage, put a baffle in your heart,” she says.
Noreen spent six months in the hospital recovering from her surgery. Her mother Deirdre visited her every few weeks, but as Noreen was one of 17 children, Deirdre had to return to Ireland to look after the rest of the family.
Noreen has no memory of her time in London, but does remember the numerous follow-up dates she had in Ireland as a child. “I remember being in the hospital for check-ups and I was just really scared,” she says. “I knew when I had to go to the hospital because I was always given new pajamas or a new nightgown… [In hospital] I would wait for my mother to come and look out the window. Every woman with black hair and a fur coat I thought she was…
“You’re this little five-year-old … and nurses and doctors came and went … it’s only now, looking back, that I realize how scared I must have been.”
Around 500 babies are born with congenital heart disease (CHD) in Ireland each year.
In the 1950s, those born with CHD had a 15 percent survival rate, while today the rate is between 85 and 90 percent.
These medical advances mean that today there are more adults living with CHD than children. In Ireland, four adults in 1,000 have a congenital heart defect.
According to a new book Healing Hearts and Minds: A Holistic Approach to Coping with Congenital Heart Defects, this generation of adults with CAD faces many ongoing challenges, including the trauma of repeated invasive surgeries. There are also many cases of anxiety, depression and PTSD within the community.
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Healing Hearts and Minds looks at the long-term effects of CHD on people
Throughout her life, Noreen has undergone repeated procedures.
She’s had two angioplasties – which dilate the arteries to make sure there aren’t blockages – and had a stent placed in her superior vena cava. She also has frequent MRIs and echocardiograms.
As a result, she has many physical scars. “I have one in the very front — some people call it the zipper — and two above my belly button and one on my back,” she says. “I love what the scars represent, but I hate what they look like.”
She remembers being asked to show people her scars when she was younger and recalls being uncomfortable with it.
“I was told, ‘Oh, show Mrs. Hogan your zipper scar.’ When I was told that, I felt dejected. I thought ‘why do I have to show these people?’ …and that’s why I hated the scars.”
Even today, she says, people often stare at her when she wears certain clothes. “You’re on vacation and had a great swim and you see someone staring and your spirits just sink.”
Noreen, who lives with her husband Michael, is still learning about some of the long-term effects of her condition.
She was diagnosed with epilepsy eight years ago and is now on medication. She was told that her epilepsy might have been caused by her CHD.
She also says problems with her heart kept her and her husband from having children, as medical professionals told her it could significantly shorten her lifespan.
“Even though we were disappointed about that, we thought, ‘OK, that’s just the way we have to go.'”
In Healing of heart and mindthe psychologist dr. Liza Morton and clinical social worker Tracy Livecchi examine the long-term effects of CHD on people.
Both authors have CHD; dr Liza Morton was fitted with her first pacemaker when she was just 11 days old.
She was born with congenital heart block – when the electrical signals in the heart are blocked or interrupted.
“I was very ill and was going to die, so I was taken to York Hill Hospital in Glasgow. When I was four days old they tried to fit me with an external pacemaker and it turned me pink and brought me back to life,” she says.
Doctors then attempted to fit her with an internal pacemaker, which resulted in a stroke, but the next attempt was successful and at six weeks old her mother was able to take her home.
for dr Morton “was dependent on a pacemaker for every beat of my heart my entire life.”
As a child, KHK influenced many facets of her life. “Pacemakers weren’t built for kids, they were bulky and had a set rate…so I couldn’t be very physically active…that precluded gym class; I really wanted to take dance lessons, but I couldn’t.”
When she was seven years old, she had her fifth pacemaker fitted. Now she’s in her forties and she’s on her eleventh.
“It’s pretty unusual to be dependent on medical care for life,” she says. “A lot of it is very invasive and painful [surgery]. I have many memories of my childhood on the ward.
“One of the hardest things was that my mother wasn’t allowed to come to the theater. So people in green gowns would come and wheel you away through swinging doors… I have a lot of traumatic memories of all those black butterfly bites.”
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dr Liza Morton has written a book about CHD
dr Morton underwent open-heart surgery as a teenager for a hole in his heart. These surgeries affected her mental health, and she was diagnosed with PTSD in her late teens.
“I felt from a young age that this wasn’t normal and that there was no psychological support,” she says.
She found growing up and entering adulthood with CHD to be deeply isolating as she did not know anyone who had had a similar experience.
Sometimes she felt she had to hide her condition. “I’ve had to deal with that my whole life,” she says. “It’s affecting your relationships, your finances, your work and all those life decisions.”
dr Morton says the adult CAD community is a relatively “new medical population,” and she wants to highlight some of the trauma and difficulties this community is facing.
“Studies show that the lifetime prevalence of anxiety, depression, and PTSD is about 50 percent in adults with CHD, and there are high rates of PTSD in children and parents of children,” she says.
She and Ms. Livecchi hope her book will help the next generation of CHD babies and ensure that medical professionals recognize the additional adversity they face and try to ensure that more support systems are in place for them.
“If someone in their 40s or 50s is diagnosed with cancer or has a heart attack…there’s often good support for that…but for some reason you’re expected to cope when you’re going from cradle to grave at a Suffering from illness… we are constantly being missed and we want to address that. You can’t just expect people to be grateful to be alive.”
Healing Hearts and Minds: A Holistic Approach to Coping Well with Congenital Heart Disease by Tracy Livecchi and Liza Morton is available now and will be published by Oxford University Press.
https://www.independent.ie/life/health-wellbeing/health-features/im-a-miracle-baby-what-its-like-to-live-with-a-congenital-heart-disease-42297526.html “I’m a miracle baby” – what it’s like to live with a congenital heart defect