When Maili Candelario gave birth to her second child, a baby boy named Elias, she was overjoyed. Her daughter was also excited to be a big sister and took her older child job very seriously.
But at only 5 weeks old, Candelario noticed Elias was making small movements. "At first, I thought he was experiencing colic pain. My sister thought it could be newborn jitters," she said.
The family shared video clips of the quirky movements with Elias' pediatrician. The doctor immediately sent them to the nearest emergency room, where they ran a number of tests including an Electroencephalogram (EEG) to monitor the brain waves and a Magnetic Resonance Imaging (MRI).
The family soon learned Elias was suffering from seizures due to cortical dysplasia, a congenital malformation in the brain which can lead to pediatric epilepsy conditions. Elias was placed on several medications to reduce the number of seizures he was experiencing and help control them from getting worse. When the medications did not provide relief, doctors suggested Elias may need surgery to remove the affected area of the brain that was causing the seizures.
The Candelario family was referred to Nicklaus Children's Hospital's Brain Institute, an international leader in the treatment of epilepsy and seizure conditions. They were transferred from their hometown in Orlando via the LifeFlight Critical Care Transport team to Miami where the team of experts would meet and form a plan little Elias.
"What was unusual about his case was how young he was to be having seizures and the fact that he was not responding to medications," said Aileen Rodriguez, Advanced Registered Nurse Practitioner with the Brain Institute.
The team had to carefully weigh the benefits of waiting until he was a little older and had more weight to do surgery, but due to the number of medications he was taking, he was not gaining weight.
"Elias was so sedated from the amount of medications that he was not gaining weight. We knew at that point that surgery would greatly improve the quality of life for this child and minimize the developmental risks down the road," said Rodriguez.
Elias underwent surgery on June 10 at only 3 month's old, and has been seizure free since.
Doctors have been able to wean Elias off almost all his medications and may be completely med-free by his first birthday.
At a recent follow-up visit to the Brain Institute, Elias surprised the care team by running down the halls of the waiting room. "I was so happy to see him running around already at only 10 months old"
, said Rodriguez. "It is a true testament to our goal in ensuring our patients achieve the best quality of life"
, she said.
As Elias approaches toddlerhood, Candelario says she is thankful for the team of doctors at Nicklaus Children's Brain Institute for giving her little boy a good chance at a bright future ahead of him.
"If I can share one message to other parents out there it is that as scary as surgery, medications and words like seizures may be, there are amazing options out there. As your child's champion, it is important to consider all your options. In Elias' case, we were fortunate to have been in the best hands possible and we are forever grateful," she said.