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Heart Awareness Month: Our Experience with Long QT Syndrome (LQTS)

February is American Heart Month. My family tries to do our part to spread heart health awareness.

My daughter was diagnosed with Long QT Syndrome, which is a rare heart rhythm disorder, when she was about two months old. She’s had to take medication three times a day. Long QT Syndrome can be inherited or caused by certain medications. I passed her a gene mutation that cause her heart condition.

It is common for some families to not be aware of the gene mutation until they have a sudden death in the family. My family is lucky that an ER doctor found my mom’s condition and referred her to a cardiologist. Then, we were all able to have genetic testing done.

I am so thankful we know about our heart condition because the beta-blockers that we take protect us.

We still have to be cautious, but the chances of a heart event happening are less because my mom took advice from a doctor and was tested.

Exercise or swimming can cause a heart event in the type of Long QT Syndrome we have. A parent will always worry about their children, but it does weigh a little heavier on my mind for my daughter. Every time I hear about a child in our heart community collapsing during a basketball game or dying while going down a water slide, I am more careful with my daughter for a few weeks after.

Though I’m glad she’s protected by medication, I still worry about her future.

Will I ever feel comfortable with her swimming without me? Right now, she’s usually only around people who know her and know about her heart condition. What about later in life when I might not be there to protect her? For now, I guess I educate her on how to care for herself and how to be safe.

My daughter is active and healthy. She was able to play t-ball and does dance. We just take precautions like knowing CPR, paying attention to AED locations, and taking plenty of water breaks to avoid dehydration.

Here are some things I would like others to know:

  • CPR- It is a great idea for everyone to be CPR certified. Even if you don’t have heart problems that run in your family, you never know when an emergency might happen and you might be able to save a life.
  • The SADS Foundation (Sudden Arrhythmia Death Syndrome) has a risk assessment for your children on their website.
  • Pay attention to possible side effects of the medications you take. Long QT Syndrome can be medically induced. There is a long list of medications we must avoid because they prolong the QT interval even more.
  • Take heart health seriously. If a doctor refers you to a cardiologist or suggests tests, you should listen. We wouldn’t know about our heart condition if my mom wouldn’t have listened. She might have saved our lives.
  • You can visit Heart.org to find ways to give back or show your support for heart health.
We love to hear about how you spread awareness during American Heart Month. Share in the comments or on our Facebook page!

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