A pair of angel wings are hovering over the place where 10-year-old London Eisenbeis would venture off to dream every night.
"It was Tina's idea a while back to put some angel wings over her bed,” said Jerry Eisenbeis, London’s father. "Looking back, I can see how appropriate and fitting it was for her to have angel wings."
Jerry and Tina Eisenbeis are still trying to find answers to why their daughter is no longer with them.
"It doesn't seem real. We are absolutely devastated,” Tina said.
Their dreadful nightmare began with a trip to the Frankenmuth waterpark last month for what was supposed to be a fun day.
"She gave her dad two thumbs up. She was so excited to go down this slide cause she waited two years to go down this slide, to be big enough and comes out the bottom code blue,” Tina said.
A seemingly healthy young girl went into cardiac arrest. London was rushed to the hospital and put on life support. Her parents didn’t know if she would survive.
"Thinking your child is going to make it, then not make it, then going back and forth between those two things,” Tina said.
After a week of fighting, the little girl who loved kittens and the color blue didn't make it.
Doctors learned the seemingly healthy 10-year-old had an undetected heart rhythm condition called long QT syndrome.
"There really were no signs. She was a very healthy individual, athlete, gymnast,” Tina said.
There weren’t any signs because doctors say you never really know when the condition is going to show itself.
A normal heart recharges between beats, but for someone with long QT syndrome the heart muscle may take longer than normal to recharge between beats. It can potentially cause fast chaotic heartbeats, which in London's case can cause cardiac arrest.
"One of the problems we have is that screening is not recommended for this condition,” Dr. Kristina Nikolakeas said.
Nikolakeas said long QT often goes undetected. It can be inherited genetically or it can be acquired.
People who may be at a higher risk are:
Children and young people with unexplained fainting, seizures or a history of cardiac arrest.
People who regularly take medications such as antibiotics, antihistamines and antidepressants.
People with low potassium, magnesium or calcium blood levels.
Medical guidelines don't recommend giving a child an EKG without other symptoms.
"They would ask the patient, ‘is the heart racing? Do you feel it's fluttering? Doing anything funny?’ Then that's a red flag in their head. Time to do an EKG,” Nikolakeas said.
Without that red flag, a heart test may never happen.
"Why not the heart? They are taking gym class and they are in physical activity. Why are they testing for eyes and ears, but not the heart,” Tina said.
Tina and Jerry now worry about their 12-year-old daughter Eden.
They had her tested along with the rest of their family and though their EKGs came back clear, they're all working to mend their own broken hearts after saying goodbye to the little girl who was never short of inspiration and only wanted to make people smile by being everyone's friend.
"It's funny, she always said, ‘Mom, I think I am popular.’ And I said, ‘London, what makes you think that?’ She said, ‘everyone always wants to sit by me and they fight over who's gonna sit by me,’” Tina said.
“She had a unique way of making people laugh, not by putting them down, but by lifting them up,” Jerry said.
"I don't know when it will feel real. I feel like she's in school right now and I am waiting for her to get off the bus,” Tina said.
Long QT syndrome affects one in every 5,000 people, but if detected it can be treated.
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