Alexis' parents sound alarm after meningitis claims baby

Staff Writer

It was just Jan. 14 when her parents welcomed Alexis Kimberly Kull into the world.

The light brown-haired, blue-eyed baby weighed a healthy 8 pounds, 2 ounces and measured 21 inches in length when Christopher A. and Stephanie R. Kull first held her.

She came home from Bayne-Jones Army Community Hospital in Fort Polk, La., to the delight of siblings Kaitlyn, 4, and Christopher, 3.

Nineteen days later, Alexis went back to the hospital with a high fever coupled with vomiting. Doctors diagnosed a stomach flu and sent her home, but the symptoms persisted.

The Kulls took Alexis back five days later. A spinal tap revealed bacterial spinal meningitis, a disease that inflames the brain lining.

If detected quickly and treated, a person could recover with few if any side effects. Left undetected, it can cause brain damage or death.

Alexis died March 29.

Her parents Christopher, 25, a Pottsville native serving in the U.S. Army, and Stephanie, 24 came forward to share their story.

They hope it will help others recognize the symptoms and react in time.

``As the time goes on, it gets a little easier,'' Christopher said in an interview at his parents' Pottsville home over Easter weekend. ``It helps to talk to people and understand what's going on. I can't think of anything else I'd rather do.''

The Kulls spent time reading in the hospital's medical research library and contacted the Meningitis Foundation of America, a non-profit, Indianapolis, Ind.-based organization that formed last year, to get more information.

It turns out that meningitis is one of the leading misdiagnosed diseases in the United States, according to Kelly M. Thomas, the foundation's support manager.

Symptoms tend to mirror those of the flu. In adults, symptoms include vomiting, headache, fever, drowsiness, joint aches and pains and a stiff neck. In infants, symptoms may include pale, blotchy skin, refusing feeds or vomiting, fever, blank expressions, difficulty waking up and a high-pitched, moaning cry.

Blotches formed on Alexis' skin, and her father said she had no energy.

``She wasn't really responding,'' Stephanie said. ``She wouldn't focus on anything.''

When they took Alexis to the hospital the second time, her skin had a grayish color and the soft spot on her head had swelled. Diagnosis stuns parents

Word of the diagnosis and disease stunned the Kulls.

``We weren't really sure what meningitis was,'' Stephanie said.

They turned to each other and the telephone, contacting relatives about Alexis' condition and seeking emotional support.

Doctors flew Alexis to Louisiana State University Medical Center in Shreveport that same evening for immediate treatment two hours away. Stephanie and Christopher drove to get there.

Doctors had Alexis hooked up to a ventilator and various intravenous injections when they arrived. The couple learned that she had stopped breathing on the way to the hospital, but was now stabilized.

Stephanie spent the week sleeping in Alexis' hospital room, which soon became filled with toys, including Winnie the Pooh and Tigger stuffed animals.

She and her husband would spend the remaining weeks of Alexis' life in a nearby hotel to stay close to her. Their two other children stayed with Christopher's family in Pottsville.

Christopher's mother, Mary A. Kull, two of his sisters, Cheryl A. Hoptak and Kim M. Harris, both of Pottsville, and Stephanie's parents came to be with their children and granddaughter. 52 days in hospital

Alexis spent 52 days in the hospital. Her skin color returned to normal and she showed slight improvements in movements. However, doctors were unable to tell if the movements were voluntary or reflexes. The baby also suffered seizures.

Still, the couple hung on to every ounce of hope.

Alexis was baptized in her hospital room on Feb. 22 with her family present. Pictures show her sleeping peacefully in her basinet dressed in a white christening gown.

Alexis appeared to look healthy in other pictures her parents took in the hospital, but it was a different picture on the inside.

Stephanie said CAT scans taken in the last two weeks of Alexis' life showed that 90 percent of her brain cells and tissue were damaged from the infection. Sadly, they learned that their daughter would never get better.

With much prayer and family support, Stephanie and Christopher removed their daughter from the ventilator on March 29.

They brought Alexis to her final resting place in Schuylkill Memorial Park, Schuylkill Haven, where relatives gathered for graveside services on April 3.

``They're strong people,'' Mary Kull said of her son and daughter-in-law. ``When I went down, they had such a hard time with the decision they had to make.'' She helps others live

Christopher and Stephanie made another decision so another child could live they donated the four valves from Alexis' heart for organ transplantation.

Then they were faced with the task of telling their two children what happened to their baby sister.

``It's hard to tell them when they are 3 and 4 years old,'' Mary Kull said. ``We tried to tell them `Baby Alexis is with Baby Jesus.'''

As they looked to head back to Louisiana, Christopher and Stephanie said they planned to contact media outlets to spread the word about Bacterial Spinal Meningitis.

``Every parent should be aware of what the symptoms are, so they can be more adamant or an advocate,'' Thomas said. ``It's so preventable, it's so treatable, if it's caught right away.''

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