When Miranda was eighteen, she learned that her health issues could potentially have been inherited from her biological father – who was a sperm donor. Diagnosed at 31 with Long QT Syndrome, Miranda is now on a mission to try and help others who had the same donor get tested for this rare genetic heart condition.

Growing up, Miranda dealt with many stomach and other health issues that led her mom to tell her there might be some underlying conditions they weren’t aware of. “That’s when my mom revealed that my biological father was a sperm donor. I still couldn’t find answers for my health problems,” she says. “I was 32 and struggling to function – I’d pass out when telling stories; I even passed out during a colonoscopy.”

After some side effects from a non-heart surgery, Miranda had a severe adverse reaction to one of her pre-op medications. In the ER, her heart rate was in the twenties. “They had the crash cart pads on me just in case I arrested,” she says. After years of going to top doctors, the first person who noticed she might have a heart issue was a doctor in training who just happened to walk by and see her EKG – where the QT interval was very prolonged.

“I took this information to the doctor who was the head of the medical school near me,” she says, “and he told me that the worst that could happen was that I passed out. He told me to focus on my children, and stop focusing on my health.”

Miranda got a second opinion, as well as genetic testing for LQTS – revealing that she had LQTS Type 3 (SCN5A gene mutation). “I got an ICD and pacemaker,” she says. She started working through her family tree to see who else might be affected, including her children. The cardiologist that read the EKGs first read them as normal – but their pediatrician took it to an EP, and he read it showing that two of them had the condition. The genetic testing revealed that he was right.

“I’m a big proponent of spreading awareness that just reading an EKG is not enough for a diagnosis,” she says. ” Many doctors just look at the obvious and forget to look deeper.  The history is not enough.  It is important for doctors to listen.”

After her own genetic testing and diagnosis, her extended family started to test as well. Her mother went through genetic testing, and so did her brother, who has the same sperm donor as Miranda. Her brother tested positive and her mother tested negative – confirming that the mutation originated with the sperm donor.

“When the hospital first diagnosed me, there wasn’t clear-cut testing for this condition; now that they have that type of testing, it’s important to provide this information to others. We tried to reach out to the donor, and even called the company my family had used, so we could try and get this information to others who potentially could be affected,” says Miranda. “The company told us that LQTS was just like diabetes – low-risk and would be found during a physical at some point. They couldn’t have been further from the truth.”

Miranda’s mother did end up finding the donor’s family, and reached out. “The donor didn’t know that he had LQTS,” says Miranda. “He knew his family history but was asymptomatic, so he didn’t think it was important. At that point, his children hadn’t been tested. They learned about it later after a family member had a cardiac arrest.”

Miranda’s mother also created accounts on 23andMe and Ancestry.com in hopes of finding other potentially affected families. One day, a young man popped up as a half-sibling to Miranda and her brother. “This person didn’t know that he had a donor for a father, so not only did he find out that he had a donor father, but that he potentially also had a heart condition,” says Miranda. About a year later, another half-sibling got in contact – this time, a girl.

“Just this past week, another sister popped up,” says Miranda. “She knew she had LQTS because her son had an event while wrestling and was diagnosed; during the workup, she tested positive too.”

So far, all five of the half-siblings Miranda’s family has been in contact with have tested genetically positive or had suspicious symptoms for LQTS.

“There’s a lot to be said for genetics,” says Miranda. “It’s a whole new ballgame with genetic testing. Our story also highlights the need for a better system and better access to medical history. For one donor, with no records, to pass this on to five children is incredible; who knows how many other are out there?”