I had a heart attack at age 23

Genetic illness and its impact on a family

Louise O’Neill and son Calum (6),  in Blarney, Co Cork, with her parents Marie and Pat O’Neill. Photograph: Daragh Mc Sweeney/Provision

Louise O’Neill and son Calum (6), in Blarney, Co Cork, with her parents Marie and Pat O’Neill. Photograph: Daragh Mc Sweeney/Provision

 

Marie O’Neill was on holidays in Spain when she got the call that is every parent’s nightmare, telling her that her 23-year-old daughter was seriously ill. Louise was in an induced coma in a Boston hospital after suffering a cardiac arrest thousands of kilometres away from home.

It was a call that Marie and her husband Pat had feared and dreaded for two years since Marie’s grand-niece died from a sudden cardiac arrest in her own home at the age of 15. Her grand-niece had an unrecognised heart condition, the only symptom of which had been fainting spells, which Louise had also been experiencing since her early teens.

“When my fainting spells started to become more frequent in Boston, my parents were ringing me saying it sounded like the same thing that happened to my cousin, and told me to get checked. I went so many times to Massachusetts General Hospital for stress tests, blood tests and ECG’s, but nothing showed up. I knew myself something was wrong with my heart though,” Louise recalls.

The O’Neill’s firmly believe that Louise (now 32) would either not be alive today, or would not be the person she is, if she had collapsed in Ireland that fateful night, and not Boston. She had just put the key in the door of her Dorchester apartment after finishing a shift in the bar where she worked, when her heart stopped and she fell to the ground, banging her head.

Her American boyfriend at the time, Paul, performed CPR (which was part of the curriculum in his high school) on Louise until the ambulance arrived, only five minutes later. She had to be shocked three times on the short distance to Boston Medical Centre (BMC) where medics put her into an induced coma to protect her brain. She and her family are in no doubt that Paul saved her life, and they credit the incredible care she received at BMC with her recovery.

Meanwhile, Louise’s family at home in Blarney were frantic with worry. Marie landed at Cork Airport at around midnight before heading straight to Shannon Airport with her husband Pat, son Kieran, daughter Niamh and sister-in-law Catherine for a flight to Boston. She has no memory of those flights or airports, she just remembers arriving at the hospital and seeing her daughter lying in bed with “tubes everywhere”.

“They told us they were going to start bringing her down off the medication, but they would not know whether there had been any damage to her brain until she woke up. I had brought her teddy bear with me. I was so afraid she would open her eyes and not know me. I started tapping her face gently and saying her name. Her eyes opened and she said ‘Hi Mom’. We were all crying, even the doctor in the room at the time,” says Marie.

Marie had brought information with her about her grand-niece, who had died, as they thought at that time, of Long QT Syndrome, a potentially fatal heart rhythm condition. It was more than another year before genetic testing revealed that both Ciara and Louise had Catecholaminergic Polymorphic Ventricular Tachycardia (CVPT), an abnormal heart rhythm condition suspected to be a significant cause of sudden cardiac death in children and young adults.

Louise had surgery to have a cardioverter-defibrillator implanted in her chest to prevent sudden cardiac death in case of any future arrests. Although she was extremely fortunate to have survived and to have escaped serious brain damage, her short-term memory was badly affected and she had to relearn many basic functions, even how to feed herself. Every day for six weeks while in hospital, she had three therapy sessions with occupational, physical, speech and language and recreational therapists.

“The care I received there was second to none. I had no insurance and had overstayed my holiday visa so I was illegal in the country. It was a big worry for my parents. They met a nurse who asked them about insurance, and they told her our situation. She said there was a fund for situations like this, she filled out all the forms and took care of it all. The cost of my treatment was more than €1million and it was all covered by the fund,” Louise explains.

The O’Neill’s could have continued to avail of therapy after Louise’s release from hospital, but they were keen to get home to Ireland. However, when they tried to connect into the HSE therapy services at home, they were told they would be waiting nine months.

“When they discharged Louise, they told us we had to pick up where they left up with her therapy as soon as we got home. The longer she had to wait, the worse her outcome would be. We had no choice but to pay for private therapy,” Marie says.

As well as ongoing issues with her short-term memory, Louise had developed severe anxiety and panic attacks. She was terrified that her heart would stop again, even though she had the defibrillator. She was also having seizures, mainly in her sleep, as a result of the cardiac arrest.

“I was like a child when I came home, I was afraid to be on my own for any period of time and was very nervous of having conversations with people outside my close family, in case I repeated myself. I was constantly anxious and started declining invitations from friends, even just to go for coffee or lunch. Then the panic attacks started and I would wake up screaming. I had to move into my sister’s room.”

After six to eight months with the support of her family, her counsellor and her “brilliant” cardiologist Dr Gerry Fahy in Cork University Hospital, Louise finally began to recover her memory and her confidence. Although her long-distance relationship with Paul did not work out, she and her family will always be grateful to him and will never forget what he did for her.

When genetic tests carried out by the National Centre of Genetics confirmed that Louise had inherited CPVT from her mother’s side of the family, her mother’s 16 siblings, 80 nieces and nephews and all their children, also had to be tested. Marie and six of her siblings were found to be carriers of the CPVT gene, and four other members of the family, including two children who have since been fitted with defibrillators, have the condition. It now seems likely that another cousin who suffered severe brain damage after he collapsed in a pool as a teenager, and died 14 years later in hospital, also had CPVT.

And it is also likely that an aunt of Marie’s on her father’s side who collapsed and died after suffering a cardiac arrest on a dance floor at the age of 28 also had the condition, suggesting that it came from her paternal family.

When her own son, Calum, was born in 2010 by c-section, Louise knew that there was a 50/50 chance he would have CPVT. It was an immense relief when he was tested at 18 months and his results were clear.

She says: “I had always wanted children, but at the same time, I worried about passing my heart condition on. If Calum had tested positive, I would never have been able to let him out of my sight. He would never have been able to play sports, I would have had to wrap him up in cotton wool.”

After seven years, Louise had to undergo surgery at CUH to replace her first defibrillator with a new device. She was awake for the second surgery, which was performed by Dr Fahy, who explained everything as it was happening.

“The new device is about half the size of the old one, the technology has improved so much over the last 10 years. I have a monitor at home in my bedroom that records any defibrillator activity and sends the information through to the hospital.”

Louise is now back in college studying Social Care at Cork Institute of Technology, and plans to work with child and family services when she graduates. She can’t go through metal detectors and carries a card stating that she has a heart condition which raises eyebrows at airport security due to her youth, but apart from that, leads a normal, busy life as a full-time student and mother.

Marie and Louise both highlight the need for first aid, including CPR which saved her life, to be taught in Irish schools, and for defibrillators (and people trained to use them) in all schools, sports clubs, and communities around the country.

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