INNERVENTION R LIFE’S MOST IMPORTANT ROLE

WRITER: JENNIFER DEMPSEY // PHOTOGRAPHER: FRED LOPEZ

From as far back as I can remember, I have always wanted to be a mother. I had my first child, a boy, when I was only 19, and even at that tender age I knew the most important and meaningful role I would ever have in my life would be that of “Mom.” Marc eventually became the oldest sibling of three younger brothers: Nicholas, Clayton, and Jackson.

In 2005, life changed drastically for us all when I became a single mom to these four precious boys. More than just my children, they became my world. Then in 2008 as a volunteer cast member for the Lady of the Lakes Renaissance Faire, fellow performer and co-founder of the event Michael Dempsey swept me off my feet. We married just nine months later and our happiness multiplied when in August of 2010 we discovered we were expecting! With grateful hearts, we joyously welcomed our daughter Joscelyn Grace Dempsey into the world on May 19, 2011.

Joscelyn appeared very healthy for the few first months of life. She rolled over early and always seemed very bright and energetic. My pregnancy with her had been uneventful. None of the prenatal testing or sonograms had ever indicated any abnormalities.

Then one day when she was 2 months old, I put her down for a nap after feeding her and heard her make a strange, gasping sound. I had never seen a child have a seizure before, but as my little girl’s arms flew out in front of her and went rigid, I knew what I was witnessing. I immediately rushed her to the emergency room for help.

After several days of testing, which included an EEG, we were told that Joscelyn had a gastrointestinal condition called reflux. Some babies with reflux resort to a type of posturing in order to protect themselves from acid reflux. This posturing, which can mimic seizure activity, is known as Sandifer’s syndrome. Since Joscelyn’s EEG appeared normal when reviewed, doctors diagnosed her with Sandifer’s syndrome and gave her a prescription for Prevacid.

The next few months became a frustrating cycle of visits to the pediatrician’s office, then to the gastroenterologist’s office, and back. Joscelyn would seem to be fine for weeks, even months, but then the “episodes” would return. Joscelyn was often fussy, and at six months of age, she didn’t show any interest in crawling. She just wanted to be held and comforted. As her mother, I wanted nothing more than to take her pain and discomfort away, but I had no idea how.

In the midst of this confusion and anxiety, we faced the worst tragedy imaginable. Our 14-year-old son Nicholas was killed in a personal watercraft accident on Lake Joanna over Thanksgiving weekend.

Six-month-old Joscelyn and her surviving brothers became my reason for living. They became my purpose — the only motivation I had for getting out of bed every morning and continuing to put one foot in front of the other. Oblivious to the sadness around her, Joscelyn would wake up and beam at me from her crib. Her smile gave me the courage to go on despite the pain and emptiness in my heart.

A few months after Nick’s accident, the Educational Foundation of Lake County, which sponsors the Lady of the Lakes Renaissance Faire, and the Lake County Water Authority dedicated a magnificent tree in Nick’s honor at Hickory Point Park, the site where Nick had volunteered as a cast member in the faire each year. At the ceremony, Joscelyn had a massive episode that left her struggling for breath and her lips blue. A second neurologist performed another EEG. This time the results came back “extremely abnormal.”

A follow-up MRI was ordered and on the day before Joscelyn’s first birthday party, we were told our baby girl had been born with a very rare, debilitating congenital disorder called hemimegalencephaly, a condition in which the left hemisphere of Joscelyn’s brain was larger than the right hemisphere and malformed. This malformation was causing her to have seizures. If left untreated, her brain function would continue to deteriorate until she would be unable to walk, talk, or even recognize us. By 12 months of age, the condition had already caused significant developmental delays. Joscelyn couldn’t crawl or sit up for longer than a few seconds at a time. She also wasn’t walking or speaking. Even more frightening, her doctors also warned us that the types of seizures that stemmed from hemimegalencephaly were often intractable and did not respond favorably to medication. If we couldn’t stop

Joscelyn’s seizures, she was at risk of SUDEP, or sudden unexplained death in epilepsy.

I couldn’t lose another child.

Her doctors explained her best chance at a normal life was a radical procedure called hemispherectomy, the surgical removal and/ or disconnection of the entire left hemisphere of her brain.

Hemispherectomy is commonly known as the most invasive surgical procedure in existence today. It leaves the patient with pronounced and lifelong widespread weakness on the side of the body opposite of the hemisphere that is removed. Allowing the surgery would mean we were sentencing our little girl to years of physical, occupational, and speech therapy. We would be limiting her field of vision and risking her ability to ever speak.

But what choice did we have?

Nick was taken from us so quickly; I never had time to fight for him, but I could fight for my little girl.

The surgery took place on July 5, 2012. I spent the following day — what would have been Nick’s 15th birthday — at Joscelyn’s bedside in the same hospital where I’d given birth to him all those years earlier.

Unfortunately, the surgery was not successful. Just days after undergoing the hemispherectomy, Joscelyn’s seizures returned. Over the course of the next five weeks, she underwent three more surgeries to remove additional “bad brain” from the left hemisphere. The cycle left us emotionally drained. She would have surgery, we would get our hopes up, and then her seizures would return. Finally in early August we took our baby girl home.

However, the seizure monster would prove to be a more formidable foe than we could have ever imagined. In September, her seizures returned once again. Her doctors and I puzzled over the cause for months, fearing that perhaps her right hemisphere was also malformed in some way. My desperate need to find an answer led me to send her scans and reports to several other hemispherectomy experts around the country for their review. Joscelyn’s doctors sought outside opinions from their colleagues, as well. Finally, the source of her seizures was identified. It was a small piece of remaining malformed brain tissue on her left hemisphere, measuring no more than one centimeter by one centimeter and located in an area of the brain that was typically not thought to initiate or transmit seizure activity. On Feb. 27, Joscelyn underwent her fifth and what we hope will be her last surgery.

On August 27, we celebrated her six-month, seizure-free anniversary. The hemispherectomy surgery was so successful in eliminating her seizures that she no longer needs to take anti-seizure medication.

She is beginning to walk and is learning to talk with the aid of sign language and a speech device. She is an active, happy toddler who combat crawls and gets into all sorts of mischief. She plays happily with her toys and blows kisses to her family, friends, and therapists. She also loves to swim in the pool, swing on the swings at the playground, and watch Elmo.

In addition to going to physical, occupational, and speech therapy twice a week, she enjoys attending Kindermusik and My Gym classes with her peers and spending time at the zoo.

Thanks to dedicated doctors and devoted therapists, the love of her family, friends, and community, and the support of organizations such as the Hemispherectomy Foundation and the Brain Recovery Project, Joscelyn’s prognosis is now excellent.

Being the mother of a special needs child isn’t always easy, but every time I look at her I feel the same way I did when I was 19 and stared into the face of my firstborn child: Nothing I do in my life will ever be as important as this.