Featured image: Abigail Joy Mizzell

By Nathan Cavitt

nathan@southerntorch.com

FORT PAYNE, Ala— She was quiet.

That was the first thing Barbara Mizzell noticed about her newborn baby. The second was that she refused to nurse, and had what the doctors referred to as “tremors.”

Abigail Joy Mizzell was born on March 24, 2011 in Fort Payne, the youngest of six children, to parents Barbara and Jimmie Mizzell. Abigail was born with a rare brain disorder known as Semi hemispheric Polymicrogyria.

According to the Genetics Home Reference website, Polymicrogyria or PMG is a condition caused by abnormal development of the brain before birth. The surface of the brain normally has ridges or folds, but with PMG the person develops a large amount of folds or none at all. With Abigail it was none.

PMG can affect all of the brain or half the brain. In Abigail’s case it was the left half of her brain, causing that portion of her brain to be smaller than the right. The entire left brain, the speech portion, was affected with the exception of her hearing and vision.

“I remember the doctor said don't bother researching because I won't find much. He was also concerned what I did find would cause me more stress. I didn't listen and searched anyway, but he was right—I found one mention of it, and it was a mom blog of a little girl. I did find several related topics which I was able to read and piece some information together to help me maintain my sanity. I had to know more, anything,” Barbara said.

With Semi PMG, the affects can be numerous, ranging from seizures, developmental delay and impaired language, to name a few. Barbara began to notice those symptoms early on as she traveled from pediatrician to pediatrician looking for answers.

She found her answer at the Vanderbilt Children’s hospital. The answer broke her heart as Peter Konrad, Professor of Neurosurgery at Vanderbilt, discovered the abnormal growth which was diagnosed as Semi PMG.

“It was significant. The malformation effected half her brain. He said we should expect and be prepared for seizures. We should get her into physical therapy and speech without delay because most of her improvements were going to come before she was five. We needed to simulate her brain as much as possible.

“We asked what kind of life would she have? What can we expect? Again wait and see. ‘Just take her home and enjoy her,’ they said. ‘We won't know what she can or cannot do until she gets older,’” Barbara said.

They didn’t know if she would speak or laugh. If she did, at best it would be delayed.

Abigail attended therapy, and as she got older she started riding horses to help with her strength. She struggled to walk, but with braces, could manage a few steps at a time. The struggle was with her weight and communication.

In the following months multiple health issues started to make themselves known. At nine months of age she was the size of a 2 week old, barely weighing nine pounds. Her airway issues took over at this point. They became hard to live with.

“I slept with her in our bed where I could feel her breath,” Barbara said. “If her head was not in a certain position she couldn't breathe so I was awakened by the silence. If she snored or gurgled I had to adjust her position, and if she was silent I had to wake her and adjust her position. I don't think even Jimmie realized the extent of what was going on. He knew I was exhausted but I'm not positive he understood to what extent.”

She developed what is called Laryngomalacia, which meant the cartilage in her throat never hardened up like it was supposed to, so it needed to be trimmed back out of her airway. She also had enormous adenoids, so they removed them in addition to injecting a surgical gel into a cleft in her larynx.

In October 2012 she underwent a nearly two hour procedure and two very invasive tests—a scope of her stomach with biopsies and a scope of her lungs with biopsies. She spent 3 days in ICU because of the swelling and the test of the lungs were positive for strep pneumonia.

It seemed there was improvement as she got older. She would never run a marathon or give public speeches, but Barbara, Jimmie and her siblings were just happy to have a sense of normalcy.

That changed last year when her seizures began to increase.

She had had seizures before, but the doctors had warned Barbara she would. At the Fort Payne Christmas parade in 2011 she had her first full seizure. On Easter Sunday 2012 she had a four minute seizure, accompanied with a fever of 102.

In August of 2012 at Daytona Beach Abigail had a seizure as she was falling asleep. This was the kind that would lead to Abigail’s surgery at the Birmingham Children’s Hospital last year.

“The way I handle the day to day is get up go and get this done for her,” Barbara said. “I have moments of weakness when I cry alone, or on Jimmie's shoulder. But only for a few moments. Then it's time to shake it off and do it for Abigail what she deserves and needs to be done.”

She began to have multiple seizures, many of which were only hours apart. Some lasted well over a minute, leaving Abigail disoriented. The doctors in Birmingham decided surgery was necessary to remove the effected portion of her brain.

The surgery was a success, and today Abigail has shown great improvement. Her speech has cleared up to the point that she can speak some words, and she can now walk short distances, even without the braces on.

The one thing that hasn’t changed is Abigail’s way of making people smile. For more information about Abigail and her day-to-day activities, visit Abigail’s Army on Facebook.