Finding out I had a hidden heart condition wasn’t easy. But finding out that this potential killer might also affect my four children was much more difficult.
I also know it could have been so much worse. I could have found out when it was too late. That would have been devastating. Sadly, for families from all over Ireland that’s exactly when they discover this hidden killer.
My daughter Laura and her brother Charlie were the first children to undergo screening at the Family Heart Screening Clinic at The Mater Hospital. In fact, all four of my children were screened there – Charlie, Laura, Mark & Kevin. Unfortunately, three out of the four were diagnosed with Long QT Syndrome, the same life-threatening condition that was discovered in my own heart. I dread to think of what could have happened if our conditions had gone undetected.
Charlie is too young to understand. But Laura and her older brother Mark have a better understanding of their diagnosis. Laura puts on a brave face, but early on we noticed she doesn’t like anyone to see her taking her medication. Her best friends know about her condition but it’s not something she likes to talk about. She keeps it all very quiet. I think a huge part of why is that she’s frightened.
But knowing that she has Long QT is critical because it’s only then that doctors can take the steps necessary to prevent her heart from stopping. Since she was diagnosed Laura’s school has had a defibrillator fitted. Having that on-site is crucial if anything were to happen to her.
Of course, I wish none of my children had to go through this. For the most part we try to carry on with life as normal. We know the amazing medical team at the Family Heart Screening Clinic are doing everything in their power to ensure my children and I live long and happy lives. You see we can’t change the diagnosis of Long QT, but we can treat it.
My children can have a normal life, they can dance and play sport. And I can have peace of mind knowing that everything possible is being done to protect their precious lives.
I’m hoping that you’ll help the Mater Foundation protect families like ours all over Ireland. With our help they can reduce the number of families left devastated by Sudden Cardiac Death.
Any gift you can give today will bring us closer to ensuring doctors at the Mater Family Heart Screening Clinic have the best equipment possible to help save lives.
Thank you for taking the time to read my letter today.
Little Laura Byrne and her brother Charlie were the first children under 14 to be screened at the Family Heart Screening Clinic, in February 2016. Many more children have been screened since and in the future the clinic hopes to test children as young as 3 years of age.
This February, we need to raise €95,000 for a new ECHO machine to take clearer pictures of the heart, and this is essential when screening children’s hearts, as they beat faster and are smaller, so the ECHO is really essential for quick and detailed diagnoses.