Imagine living with a medical condition that meant that your heart could stop at any minute. Now imagine that all of your children also had the same condition that put them at risk of sudden death?
Louise Hoey from Dublin doesn’t have to imagine because for her and her three children this is their reality of living with Long QT Syndrome (LQTS).
LQTS is a disturbance of the heart’s electrical system which causes heart rhythm problems.
It is estimated that 1 person in every 5,000 has LQTS. The condition is generally inherited; however, it can also be caused by certain medications.
Each child of a person with LQTS has a 50 per cent chance of having the condition. So, if you have LQTS, your mother or father will also have the condition.
A person with LQTS is prone to fainting spells/blackouts, dizziness, palpitations and even sudden cardiac death. These symptoms are caused by a very fast heart rhythm and they can happen suddenly and without warning. The risk of sudden death is greater if you have had a previous cardiac arrest, blackouts, a very long QT interval on your ECG or have sodium channel mutations.
Louise recalled that she first started experiencing symptoms of LQTS after the birth of her twin girls Abby and Taylor in 2002. In fact, she experienced her first black out on the morning of the twins’ christening and was rushed to hospital where her symptoms were put down to the exhaustion associated with being a mother to new-born twins and a three-year-old.
Louise recalled that she first started experiencing symptoms of LQTS after the birth of her twin girls Abby and Taylor in 2002.
A few months later Louise had another blackout and in 2010 when she had a seizure in her sleep, she was hospitalised for six weeks. During this time in hospital Louise underwent a battery of neurological tests as medics were of the opinion that she had a neurological condition. However, when all the tests came back clear further investigations revealed that she had LQTS and that she would need an Implantable Cardioverter Defibrillator (ICD).
An ICD is a small electrical device that is inserted under the skin near the shoulder and monitors the rhythm of the heartbeat. When it detects an abnormal rhythm (arrhythmia) it works to restore a normal rhythm. It can act like a pacemaker when the heart is beating too fast or too slow, delivering a series of electrical impulses, this is known as “pacing”. It may deliver a bigger electrical shock to remedy more serious abnormalities, this is known as defibrillation.
Recalling the time, Louise said, “two or three days after my diagnosis I was told that I may have to get my kids screened for LQTS.”
“It was an off the cuff comment I didn’t think they were going to have it. There was a 50/50 chance. The twins would have been about 8 and Leon would have been 11. There was no history , no early deaths in our family and we didn’t have any cot deaths or anything like that, so we weren’t typical of the condition.”
“ Two or three days after my diagnosis I was told that I may have to get my kids screened for LQTS .”
Louise said it was only when she got home and started researching LQTS that she realised just how serious it could be. She said she immediately contacted the Irish Heart Foundation who put her in touch with the CRY (Cardiac Risk in the Young) Centre in Tallaght Hospital, where Leon and the twins were eventually diagnosed with LQTS.
The CRY Centre raises awareness of Sudden Cardiac Death or Sudden Adult Death Syndrome in young people. It also provides free counselling and heart screening for families and individuals affected by sudden death or cardiac conditions.
“I went to the CRY centre the following Tuesday and Leon was diagnosed straight away. He came home with beta blockers in his pocket. That was really tough because he was playing for Dublin in the under 12s team and that was his dream. He was told he couldn’t play sports anymore. For an 11-year-old that was really tough.”
Over the years the total sports ban on people with LQTS has been lifted with a number of restrictions such as being on regular medication and episode free for a period of time, sadly however this was too late for Leon who is now 21.
“I was terrified …I thought they were all going to die,”
Meanwhile when she received the devastating news that all three of her children had LQTS Louise said all she could think of was that any one of them could die at any time.
“I was terrified …I thought they were all going to die,” she said.
All Louise’s children are now on medication and the family have a defibrillator at home. In 2011 Louse and a group of friends ran the Women’s Mini Marathon to raise funds for two defibrillator machines one of which they keep at home and the other they donated to the local sports club.
In 2015 one of Louise’s twins Taylor collapsed and had an ICD inserted which was a very frightening time for the family.
Today all three of Louise’s children very much accept their diagnosis and thanks to their mother’s care and attention know never to underestimate it.
They take their medication religiously and are aware that they cannot take certain medications or medical treatments as they can be dangerous in LQTS.
“Anytime the kids have been in hospital or something has happened to me I wouldn’t ring my best friend, I would ring someone from the support group,”
Louise too has learned to relax over the years and says the family doesn’t allow LQTS to take over their lives as much as they did in the beginning. She also paid huge credit to her husband Troy for all his love and support.
“They never miss school. If I got a call, I know it would be serious they don’t mess around with it they take it seriously but at the same time they live full lives ….it doesn’t really impact their lives,” she said.
Despite the worry of living with LQTS and the real fear that her children could suffer a sudden cardiac death at any time, Louise says she has met a number of amazing and supportive people through the Irish Heart Foundation’s LQT support group who she said were “friends for life”.
For Louise and her family, the LQTS Support group has been a real lifeline. “Anytime the kids have been in hospital or something has happened to me I wouldn’t ring my best friend, I would ring someone from the support group,” she said.
The Irish Heart Foundation’s Long QT Syndrome (LQTS) Support Group is for adults and children affected by the condition and their families.
The Group is run by people who have LQTS or have family members with LQTS and is supported by the Irish Heart Foundation.