Although she lives a seemingly normal life now, her journey to being able to do these regular activities was a fearful and exhausting one.
The Fontes family’s nightmare all began a few days prior to Jan. 16, 2011. Isabella was barely 2 months old when she began having seizures. Her mother, Cindy, took her to a pediatrician who said she had reflux. The doctor prescribed her some medication, but the seizures continued.
Cindy said seeing her baby having seizures without being able to help was one of the toughest things she’s ever experienced.
“On Jan. 16, 2011, we had to rush Isabella to the ER at Yale-New Haven Hospital. I remember the horrific ride to the hospital like it was yesterday. I held my baby in my arms helplessly watching her have seizure after seizure. Running in the ER I was in tears asking for someone to please help my baby.”
Cindy said once Isabella was admitted she was put on medication and underwent multiple types of bloodwork and tests to finally decide on a diagnosis. Isabella was diagnosed with frontal lobe cortical dysplasia, or epilepsy.
According to epilepsy.com, epilepsy is a disorder marked by abnormal electrical discharges in the brain, by attacks of convulsions, and by loss of consciousness.
“I’ll never forget how my world pretty much stopped when I heard the words ‘Your daughter has a malformation on her brain,’” said Cindy. “I didn’t really understand what that meant at the point but could tell by the doctor’s tone it wasn’t good.”
Cindy explained the torturous thoughts she endured while trying to figure out why this had happened to her daughter and if it could be a result of something gone wrong during her pregnancy. The doctor explained that it happens in rare cases, but she still felt that somehow it was her fault.
After returning home about a week later, Isabella continued to have multiple seizures every day. She was on six medications at one time and nothing seemed to help. Cindy and her husband, Peter, didn’t give up, hoping that somehow the medicine would start to work.
Cindy said they tried many different prescriptions. Some made it worse and some had no effect at all.
After tons of meds and testing, the family realized Isabella was nothing but a “science project” to her doctor. Cindy said all he ever spoke about were unfamiliar statistics and conferences he had gone to. He also contradicted his diagnosis several times.
“At one point he said she had Rett, which is a very serious illness, then he said it might be genetic, then it wasn’t. At this time we realized it was time to switch doctors,” said Cindy.
The family spoke with a neurosurgeon at Yale-New Haven Hospital named Dr. Michael Di Luna and he told them he wanted to know what was causing Isabella’s seizures so he would begin to focus specifically on that.
Dr. Di Luna recommended a pediatric neurologist named Dr. Susan Levy. Cindy said that immediately after meeting her, she felt Isabella was in good hands.
Cindy said Dr. Levy couldn’t believe how many different medicines such a small child was on. She told Cindy she would never have put a baby on that many meds, and from then on they began weaning her off the ones that clearly weren’t making a difference.
Although she was still having many seizures, they weren’t as numerous and didn’t last as long as what she had been experiencing. Cindy said Dr. Levy genuinely cares about Isabella and she can tell she has her best interests at heart.
Dr. Di Luna had told the family that at approximately 18 months Isabella should have brain surgery to remove the malformation or dysplasia from her brain that was causing her seizures.
The road up until that surgery was long and tough on Isabella and her family.
Nearing her 18 months they began doing testing for Isabella’s surgery.
“It was so difficult see her poked and prodded, test after test. They told us that the surgery would either stop Isabella’s seizures immediately, she would have some and then they would stop, or she wouldn’t have any and then she would but they would also stop. In the end, Isabella would be seizure-free.”
Cindy said she had initial reservations on how the surgery would impact Isabella’s brain.
“They also went on to tell us because of where it was and Isabella was so young that she could move whatever info she had there to another area of her brain,” said Cindy.
The family had finally received some good news through this long process, only to hear that the process wasn’t that simple.
“She would have a right-side weakness and would have trouble doing things like tying her shoes and buttoning a shirt. I remember crying most of the way home from that visit. After realizing that Isabella being seizure-free was most important and great, regardless of her weakness, we were very happy,” said Cindy.
The morning of the surgery they arrived at the hospital terrified.
“I remember holding Isabella crying and not wanting to let her go. I was so afraid, but Dr. Di Luna came in and spoke with us and made me feel a little better. I’ll never forget letting her go in the operating room with her favorite toy dog, Violet,” said Cindy.
Ten hours later the surgery was complete, and Dr. Diluna came in and said the surgery had been successful.
Cindy said she was ecstatic. She remembers seeing Isabella lying swollen and looking so tiny in the hospital bed, but to her she was still beautiful and perfect. She slept next to Isabella the entire night.
The next morning Isabella woke up and was seizure-free for the first time since the treatment had started.
Isabella was brought home on June 5, 2012.
“That was like the day Isabella was born — we would have to pretty much start from there.”
Cindy said Peter’s and her families were there through the entire journey and they’re beyond grateful.
As if the family hadn’t already been on a roller coaster ride already, in May 2014 Isabella had a seizure after being seizure-free for about two years.
“Suddenly one day she had fallen asleep in the car and as she was waking up, Pete noticed something wasn’t right. She was stiff for a few seconds. We just couldn’t believe it. Then it happened again and continued to happen every time she would take a nap,” Cindy said.
They called Dr. Levy and scheduled an appointment.
After doing an electroencephalogram (EEG), a test that detects electrical activity in the brain, Dr. Levy said she saw some electrical activity in her results.
Isabella was put back on medication and continued to have about one seizure per day.
The family has since put Isabella on a low-carb diet and it’s been awhile since they’ve seen her having a seizure.
Cindy said she and Peter are constantly fearing a seizure.
“We are concerned every single second about her. We want to protect her forever,” said Cindy.
The family will be going back to see Dr. Levy soon and are awaiting further instructions.
Isabella continues to grow and adapt to everyday life by attending Elizabeth Shelton School and fulfilling her love for learning.
The Fontes family will participate in the 12th Annual Sharon’s Ride/Run/Walk for Epilepsy on May 14 in West Haven. For more information visit https://www.epilepsyct.com/sharon.php.