When Lucinda McNerney was just 18 and newly living her dream of working in London, she got a severe sore throat that was slow to mend and ended up in hospital.
More terrified that she’d be packed home by her Irish mammy, than the thought of there being anything seriously wrong, she soon found out she had a hereditary heart condition after going into cardiac arrest from a reaction to antibiotics she was given.
Lucinda recalls: “My body went into trauma and I totally lost my short-term memory. The medical staff used the shock defibrillator on me. I was shocked to learn that I had an undiagnosed heart problem and that it was more than likely hereditary.”
After a fortnight in intensive care, Lucinda was diagnosed with Long QT Syndrome (LQTS), an inherited defect in the heart’s rhythm.
Pacemaker and LQTS Syndrome
Back when Lucinda had a pacemaker fitted, she remembers it: “caused a horrible scar, which isn’t nice at any age, never mind at my impressionable age” and was put on beta blockers for the rest of her life, to counteract the action of adrenaline, which makes the heart beat faster.
People with LQTS suffer fainting spells, dizziness and palpitations, and in worst case scenarios, the condition causes seizures and sudden death. One in 5,000 people have the syndrome and their children have a 50 per cent chance of inheriting it.
Please note, however, that most pacemakers fitted nowadays are smaller than ever and leave a relatively small incision scar.
Genetic testing and being prepared
So, after Lucinda met her husband Frank McNerney while studying for a degree in Theology and Psychology, she then had to consider the possible impact of her condition on her unborn son Oisin.
“Genetic testing had just become available and I requested that Oisin have the test to determine if he had inherited my heart condition.”
Oisin was borderline and Lucinda’s second child Aoife was born a year later. The couple’s “little surprise” Dervla arrived six years after that. By now Lucinda had become the head of Irish Hearts LQTS Support Group, the couple had a defibrillator in the house and they were both trained in CPR. They felt LQTS-proof.
Various tests had by this time confirmed that both Lucinda’s mother and grandmother had LQTS, but when it was discovered that little Dervla also had the condition and had a life of beta blockers ahead of her, Lucinda was devastated.
Looking after a baby with LQTS
Four generations of the same family forced to live with this condition seemed so unfair.
“When my baby was diagnosed with the condition it threw a whole new light on the subject,” Lucinda says.
Watching for every sign and symptom that her baby may be having a cardiac arrest became the norm and Lucinda says she and her husband even trained to use a stethoscope to detect any problem.
Get checked, coping and the support groups
Lucinda, who now chairs the Sudden Adult Cardiac Death (SACD) Council, after heading up the LQTS group for many years, says she has talked to lots of parents who have lost children to LQTS, and warns that it can be fatal if not detected.
“It is vital to get health screenings to detect hidden defects,” urges Lucinda, adding that parents of children with LQTS should get as much information from medical professionals as they can, make sure they know how to deal with a crisis situation and join a support group, such as Irish Heart’s.
Lucinda’s final piece of advice is: “And then, as with coping with other serious health conditions, people need to get on with their lives.”
We thank Lucinda for sharing her story and we urge you to get in touch with us or any of the Support Groups to learn how to live life well and happy, whatever your heart condition.