In 1999, we got a phone call on a Friday from our son who lived on a college campus where his sister also went to school. We were on vacation. He said that his sister had passed away – he wanted to tell us before the police called us.

Nobody knew why she had passed away. She was working at the public safety dispatch the previous night (which was her job at school). In the morning the fire chief didn’t hear from her, and after they called her a few times and didn’t hear from her for over 30 minutes, they decided to check and see what was going on. They found her down, called 911, and started CPR. She was taken to the ER, where attempts to resuscitate her failed.  She was then transported to the coroner’s. Because she was in a college community, the police roped off the area – they didn’t know yet if her death involved drugs or foul play.

When my husband and I arrived at the coroner’s, we were not allowed to see her, and were told they would be doing an autopsy. They warned us that it could take two weeks to a few months to get the results. I remember the coroner saying that even though it was a coroner’s case, they sometimes didn’t find the cause of death. They said that sometimes they ended up writing down “cause unknown.”

A nurse from the ER who was not on duty when my daughter came in called us and said that she was so sorry for what happened. She didn’t think my daughter was mixed up in drugs or a bad situation – and she was healthy, a volunteer firefighter. The ER nurse said that in case the coroner didn’t find anything, she had some information she’d be happy to drop off for us. Her daughter had a condition called LQTS.

My sister was very close to my daughter. She introduced her to lots of girlie stuff, and they went on a lot of adventures together. She wanted to fly out to the service but couldn’t because she had young children. She was talking to my mom about the service, telling her which flowers to get, when suddenly she went quiet on the other end of the phone. She was calling from the bathroom because she didn’t want to wake her children, and her husband was in bed. He heard the phone drop on the floor in the bathroom, and went to see what was going on. He told my mom that my sister had collapsed, and he performed CPR and called 911. She was admitted to neurocritical care; they thought she’d had a seizure. After doing a cardiac workup, they discovered that she had LQTS, and she was given an ICD. She’d never had an episode in her life before that day.

We called the coroner and told him about the new diagnosis in our family. He’d never heard of LQTS, but said it could make sense for other young people he’d seen as well. Because my daughter was a volunteer firefighter, she’d had a physical less than a year prior to her death – and it included an EKG. After fighting HIPAA, we finally got that EKG sent to my sister’s EP in Michigan, who said my daughter had LQTS too.

The nurse who had offered to give us information about LQTS told us about a foundation in Utah called the SADS Foundation that specialized in supporting families. We contacted them and they were very helpful, and gave me the names of about a dozen families who had also lost young daughters to LQTS, and we connected and shared our experiences. It was amazing how similar our stories were.

Two or three years later, my son sent me an email about a research project from Mayo Clinic on LQTS, where they could do bloodwork and genetic testing. I participated in the study. When I got an EKG shortly after my daughter’s death, I was diagnosed with LQTS and placed on beta blockers, which were hard for me to tolerate. I got a cardiac consult with someone on my health insurance plan, who did a ton of tests and said that because I was in my 40s, I would be fine, and that this condition was new and therefore over-diagnosed. He took me off the medication and told me not to worry.

During the course of my testing for the study, I did a treadmill test, where I was again diagnosed with LQTS. They drew my blood and sent it to Mayo, and said it was possible that other family members were affected, and that sudden cardiac arrest does happen to older women. I got another consult, and this doctor said that with my family history, if I couldn’t tolerate beta blockers, I should at least get an ICD. He compared it to a seatbelt in a car – most of the time you don’t need it, but when you do, it saves your life.

A few years later we got a call from Mayo Clinic, saying that they had the result of the research, and that my blood showed my family did have LQTS Type 2. My sister, son, and grandson also ended up having it. My son had already been diagnosed shortly after his sister’s death and had an ICD.  He was told his son, however, did not have it after he had contradictory EKGs.  After the genetic testing revealed he did, he was seen by a pediatric electrophysiologist and placed on medication. He eventually, at age 9, had an ICD placed. My granddaughter, who had been on beta blockers since birth because she was diagnosed with LQTS by EKG when she was born, actually ended up not having it. That’s why genetic testing is so important – because the EKG is tricky to read.

Through the years I’ve kept in contact with the SADS Foundation. I’ve participated in research and been a part of SADS Safe Schools, especially in Modesto, and made sure that all our school districts and school nurses knew about it. They have been a great source of information over the years, which is why we are supporters of the SADS Foundation.