Long QT Syndrome has shaped the lives of the Mallon family

By June Shannon Heart News   |   17th Jun 2021

Award winning goldsmith crafts loving collection inspired by the Irish Heart Foundation

 

Garrett Mallon is a talented jewellery maker who puts his heart into each and every piece he crafts. He is also a proud father and loving husband who is generously donating a percentage of the sales from a special Irish Heart jewellery collection to the Irish Heart Foundation.

Garrett and his wife Sarah live in Omeath in Co Louth with three children  Lenna, Michael and Oisin.

Like every Irish household life is busy but ten years ago when Sarah and both of her young sons were diagnosed with Long QT Syndrome, their lives were changed in an instant.

Long QT Syndrome (LQTS) is an inherited heart condition. It is a disturbance of the heart’s electrical system that 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 you may be taking for other medical conditions.

A person with LQTS is prone to fainting spells/blackouts, dizziness, palpitations and even sudden cardiac death.

Each child of a person with LQTS has a 50 per cent chance of having the condition. If you have LQTS, your mother or father will also have the condition.

Her life was shaped with the anxiety of what could happen to her children at any moment.

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Sarah recalled that her younger son Oisin first started complaining of feeling dizzy and suffered a sensation that his heart was beating too fast.  Michael, her older son, had complained of chest pain when playing football a few years earlier however, medical tests at the time did not find anything out of the ordinary.

Sarah began to get extremely concerned and she had a feeling that something was not quite right. Unfortunately, her maternal instinct was correct and following a number of tests Oisin was diagnosed with Long QT Syndrome in 2011 at the age of 8.

With Oisin’s diagnosis Sarah was advised to bring her other two children for genetic testing and the results showed that both Sarah herself and her older son Michael had the same condition.

When Sarah, who had suffered an unexplained event that ended up in the Emergency Department a few years ago, was also diagnosed with Long QT, she said what happened next was like “Pandora’s Box’.  Her father who had suffered with fainting attacks for years was diagnosed with Long QT Syndrome at the age of 70 and Sarah’s sister was also diagnosed with the same condition, as were other members of the family.

“It was very difficult I had a 14 year old boy and an 8 year old boy with Long QT Syndrome,” says Sarah who recalled that initially her younger son wasn’t invited for play dates as people were fearful of his condition, so she changed her working hours to accompany him at birthday parties and days out.

“Nobody understands ....you get up in the morning and they don’t answer and you are picturing did something happen in their sleep?”

Sarah Mallon

Sarah and Garrett’s older son Micheal was a talented footballer and had just won the Louth County Final when he was told that he couldn’t play any sports anymore due to his heart condition. This was a devastating blow for the sports mad young man.

Sarah described the initial period after her family’s diagnosis as a year of “complete and utter panic” and her life was shaped with the anxiety of what could happen to her children at any moment.

“Nobody understands ….you get up in the morning and they don’t answer and you are picturing did something happen in their sleep?” she said.

She has learned over the years that it is possible to live well with Long QT Syndrome as long as you comply with treatment and medications etc.

Sarah said the support she received from the Irish Heart Foundation and in particular a summer residential camp for families with Long QT that the Mallon family attended as “an absolute life saver”.

For Sarah being able to talk to other parents who were also going through the anxiety of having a child with a heart condition was a huge comfort.

She added that for her boys, spending time with other children who were also living with Long QT meant that “they weren’t on their own, they weren’t abnormal.”

The summer camp resulted in life long friendships with other families and Sarah is now the Chair of the Irish Heart Foundation’s Long QT Support Group, a role in which she regularly takes calls and counsels anxious parents whose children have recently been diagnosed with the condition.

“Just that initial complete nightmare panic of the first year when you don’t know …but it’s important we would be very positive on saying, you can live well with this condition,” she said.

The Irish Heart Collection features a gold heart nestled within a pendant, which Garrett said, reflected the Irish Heart Foundation “being there for us, they looked after us.”

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Asked what advice they would give to someone who has recently received the news that their child or they themselves has Long QT syndrome, Garrett said it would be to let people know that you can have “a full active life” with the condition but you still have to “keep looking over your shoulder” because “there are certain things that you are not allowed to do.”

Sarah said she too would like to reassure people that you can have a normal life and she urged people to reach out and talk to other parents for support.

Parents she said who like her have had the experience of talking to the school about their child’s heart condition, who have had to talk to their children to help them understand their diagnosis and the reasons why that their friends might treat them differently.

“The kids do adjust and I think ….the younger they are the better,” she said.

Like most mothers Sarah hasn’t had time to concentrate on her own heart condition.  All of her energies have been focused on her kids to reassure them and give them the confidence to live full lives with their condition but also to let her know if they were feeling unwell. However, as someone who confesses to living  a very busy life, she said she was aware that she has to be mindful of her own heart health.

Sarah paid huge credit to the help she received from the Irish Heart Foundation patient support services over the years, including the nurse support line, which she said was extremely helpful when her family were trying to navigate their way through life with Long QT Syndrome but also when she sadly lost her dad to a stroke a number of years ago.

Garrett too could see the positive impact this support was having on his wife and he came up with the idea of the jewellery collection to “give something back” to the Irish Heart Foundation.

An award winning goldsmith trained in Dublin and London, Garrett creates unique contemporary sculpted jewellery using traditional skills and over 30 years’ experience at the jewellery bench. His master craftsman skills along with his signature style of combining metals and textures have created an audience for his work throughout Ireland and the rest of the world.

The Irish Heart Collection features a gold heart nestled within a pendant, which Garrett said, reflected the Irish Heart Foundation “being there for us, they looked after us.”

“Its just my way of saying thank you,” he said.

On his website Garrett’s Irish Heart collection is dedicated to “the brave of heart” which is also an extremely fitting description for the entire Mallon family.

Learn more about the Irish Heart Collection by Garrett Mallon

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children heart Long QT Long QT Syndrome patient support

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