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We first contacted SADS when my middle child was 8 years old and had several “episodes” that looked like seizures.  We had no idea what the problem was.  His brain scans were good.  His pediatrician told me “oh, all 8 year olds faint now and then”, which infuriated me, because that is just not true.  I kept digging and someone suggested that his heart be checked.  I almost had to beg the doctor to do an EKG, but they did and his prolonged QT was discovered.  He was fine after his meds were figured out.  While all this was happening, I was pregnant and gave birth to my daughter.  Immediately we all had EKGs.  My oldest son and I did not show prolonged QT in our EKGs.   My daughter was too young for a conclusive diagnosis at that time.  My husband was the carrier.  He, of course, had no idea.  He never had any problems during his life.  He played sports and basically did anything he wanted to.

During the next several years we occasionally had our daughter tested and it was inconclusive until she was 5.  She did have it.  At that same time our middle son was genetically tested to identify the gene, as well as our daughter.  She was immediately put on medication.  She had never showed any symptoms and we are thankful to say that she is now 22 years old and still has not shown any symptoms. 

When my middle son turned 19, a college student, he was watching TV with a friend at about 7 in the morning – finals week.  He collapsed.  Thankfully someone was with him.  The responding officer did CPR until the paramedics came and intubated him.  Five days later, they removed his breathing tube and flew him to Phoenix where he received his first combo pacemaker/defibrillator.   We came to find out he was not taking his meds as he should have been.  We also were told he had a less than 1% chance of surviving the ordeal.  He had no problems with his recovery with the exception of having to change all his life’s ambitions as a firefighter, Marine, police officer, etc.  Obviously he could not do everything with this new device, aside from the fact that he should not be anyway.  Again, being the stubborn boy that he was, he went on and became an EMT and then paramedic based, out of all places, Las Vegas.  I am thankful to say that today he is getting ready to turn 30 and is a critical care air-medic.  He is married with 3 children, one he adopted, and two that are biologically his.  With the information we have from his genetic testing we were able to immediately have the children tested.  One has LQTS and one does not.  Also recently, our other son, who is married and about to have children, was genetically tested and he does not carry the gene.  But this is not all to our family’s story.

In 2017, my husband was diagnosed with large B-cell Lymphoma.  His treatments were intense.  He had a stem cell transplant in June of that year.  When one receives this transplant, they bring your body to a near death condition and if you do not have the stem cells to implant, you would die.  He did great.  They implanted the cells. However, during that first week of recovery, his heart stopped.  His magnesium, potassium and other important levels were bottomed out.  He was also given an anti-fungal that is known to cause abnormal heart rhythms.  The doctors knew about his LQTS and further knew that he never had any problems with it.  For a week he was flat on his back until his heart stabilized.  He had many episodes of torsades.  We had to wait until his blood work was stabilized before he could receive a defibrillator.  He did and he is back to work, in remission, and doing fine today.

Although the stories of my children are pretty common for many LQTS patients, I feel my husband’s story may be helpful to someone out there with LQTS, facing cancer or any other disease and the treatments that follow.

Would you like to share your family’s experience with a SADS condition?   
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