A missed mono diagnosis cost a former Capital Region teen her life – Times Union

FERNANDINA BEACH, Fla. — It started like any common cold.

Ariana Delfs had a headache and low-grade fever. She felt tired and run down. It was late November. Everyone gets colds that time of year, her father Mark Delfs said.

What they and doctors didn’t know until it was too late was that 17-year-old Ariana had mononucleosis — also known as mono or kissing disease because it spreads through saliva and is common among young people.

While most people’s bodies can fight off mono with plenty of rest, fluids and a healthy diet, Ariana’s couldn’t. She developed encephalitis, or brain swelling, and died last weekend.

Now, her family is speaking out in hopes of raising awareness about mono and its rare but serious side effects.

“It was just a weird, perfect storm that happened to hit the wrong person on the wrong day,” said Mark. “All I can do now is try to get the word out and hopefully it will help someone, even just one person.”

Mark and his wife, Julie, were born and raised in the Capital Region and raised their kids here too, until about three years ago. Fed up with the cold and the winters, they moved from Malta to the small island community of Fernandina Beach, off the coast of Jacksonville, Fla.

Ariana left friends behind at Ballston Spa Middle School, and had a hard time adjusting at first, her dad said. The new kid in school, her family was surprised to learn at her memorial service that she had gone out of her way to befriend other kids who were new to the area, as well.

“She would invite them over to sit at her table during lunch and say, ‘How are you doing?’ ” Mark recalled. “She was a guiding light is all I can say. It’s a tiny little island and the sheer amount of people who showed up to honor her memory, we were just bowled over.”

Her symptoms began about three weeks ago with headaches and fatigue. When Tylenol and Advil wouldn’t shake the headaches, her family took her to several doctors who were unable to diagnose the mononucleosis but gave her antibiotics for a urinary tract infection she had developed.

Then, on Wednesday or Thursday last week (it’s still a blur, Mark said), Ariana started vomiting and continued all night. By 7 the next morning, they were on their way to the hospital.

There she was placed on an IV. Then she got up to use the bathroom and lost both her vision and sensation in her legs, her father said.

“She told us that was the scariest moment of her life,” he said.

Doctors thought Ariana was having a stroke — her speech was starting to slur and she was slipping in and out of consciousness — so they called a helicopter to airlift her to Wolfson Children’s Hospital in Jacksonville.

When they got there she was in and out of it, Mark said.

“Sometimes she’d be asleep,” he said. “When she was awake she’d stare right through us. When we talked to her she would respond with gibberish.”

Doctors ran a battery of tests on her, he said. They ruled out stroke and brain tumor. They did a spinal tap to check for Lyme and other tick-borne diseases, and it was then they were able to make a diagnosis: she had swelling of the brain from mononucleosis caused by the Epstein-Barr virus.

By then it was too late. Her eyes wouldn’t open. She had suffered convulsions. Her brain had swollen so much it caused permanent brain damage.

“The doctor’s team came in and gave us the horrible news,” Mark said. “They said the mono had just unfortunately crossed over too quickly. She didn’t have a chance.”

Doctors offered to keep her on life support for as long as the Delfs would like, he said, but they decided to “let her go in peace.”

The Delfs are still processing the events of the past few weeks, and have many unanswered questions.

“It was a bizarre string of events,” Mark said. “She was a perfectly healthy teenager three weeks ago.”

Mononucleosis is a contagious disease most commonly caused by Epstein-Barr virus, according to the Centers for Disease Control and Prevention. It most often occurs in teens and young adults, and can manifest as fatigue, sore throat, fever, headache, swollen lymph nodes in the neck and armpits, swollen tonsils and swollen spleen.

The virus has an incubation period of approximately four to six weeks, according to the Mayo Clinic. Symptoms such as a fever and sore throat usually lessen within a couple of weeks, but fatigue, enlarged lymph nodes and a swollen spleen may last for a few weeks longer.

Mono can occasionally cause serious complications such as the encephalitis Ariana suffered, as well as meningitis, low platelet counts, heart problems, liver issues, anemia, and an enlarged or ruptured spleen.

“It’s a weird disease that you just don’t really think about,” Mark said. “A spotlight has to be shined on it.”

When their house began to fill up with flowers, the Delfs decided they didn’t want a house full of flowers and urged people to donate to a GoFundMe they opened in their daughter’s name. They’ve raised over $16,000 so far and are going to donate the proceeds to causes Ariana would have supported, such as the local humane society and her school’s theater program.

She loved to help, Mark explained. When she got her driver’s license she also signed up to become an organ donor, he said.

“She was very proud of that,” he said. “She just wanted to help. Help humans, help animals, save the environment. She was a powerful spirit.”

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