Have you ever heard a story that gave you chills down your spine? A story that you couldn’t help but feel as if it was you in that story? Well I have one for you. Imagine, you’re 18 years old, and having your first baby. A little boy to be exact. His room is all set up, the car seat is in place, all you need now, is the baby to fill that beautiful wooden bed, with the car bed sheets. Labor day arrives, and it is exactly everything you hoped it could be, plus that much more. You can’t believe that you just created one of the biggest miracles known to man. At 3:40pm, weighing in at 7 pounds 5 ounces, and all of 19 inches long, an image of perfection, a little piece of you. You start immediately craving all of those bonding moments. Until the morning after, before visiting hours, something strange happens. As you’re feeding your precious new baby, and you stop to burp him, he starts making an odd clicking noise. You pull him from your chest to see what’s going on, and see that the noise is coming from his mouth. His bottom lip is sucked in. The noise stops, and you take a deep breath in. You stare down at this little miracle in your arms, when he starts to turn blue. His eyes are fixated on you, they glaze over, his head drops in your hands, while your heart drops to the floor. You call for the nurses, but while waiting for them to arrive, he starts breathing again. The nurses show up and tell you that this is normal, blamed the coarseness of his skin on the lighting in the room, and the abnormal movements of his body on an immature nervous system. This happened four times the day he was born, and no one would listen. I was a young mom, but I knew something was wrong. I refused to leave the hospital without an answer. This is how my story with parenthood, and epilepsy, begins.
Stevens’s life started just as I had stated, beautiful and oh so scary. I was determined to find out what was happening with my baby, and told every doctor or nurse that came to visit us, what was happening with my newborn, every single time I saw them, and no one was concerned, until I spoke with the pediatrician on call. She witnessed what I had been witnessing, but this time, it lasted much longer, with more convulsing than before. She immediately brought him to the NICU. Now I knew that it wasn’t just in my mind, that something was actually wrong with my baby. I was terrified.
They brought me down to NICU, what felt like hours later, to tell me that they had to transfer him to a bigger hospital. One able to better serve his needs. The next two hours, seemed to last days. We ended up at St Mary’s, in West Palm, where we would spend the next month. Two weeks in NICU, and two days after release, back in to the PICU. His small episodes, ended up being longer, and more frequent. I’ll never forget a PICU nurse said to me one day, “he’s doing good this morning! His longest seizure was only 12 minutes!”. They released us with hope that he simply had idiopathic infantile spasms, which is the medical way of saying, he’ll have seizures lasting sometime thru the first year of his life. Unfortunately, they were wrong.
Stevens’s seizures continued to get worse, more frequent, the duration of these seizures started exceed my wildest dreams, occurring in clusters, and now, we had a different seizure to add to our concern. With the arrival of this new seizure, the neurologist we had been seeing at St Marys, felt it was in Stevens’s best interest, to send us on to an even more advanced hospital, in Miami, Miami Children’s Hospital. Our saving grace. We spent the next 4 months, in and out of the hospital, every other week, doing any and every test under the sun. They showed such determination in finding out what was going on inside of Stevens’s brain, I was stunned. They took him in as a new patient, but cared for him as family. Test after test, possible conditions, and new medical terms every day, we finally agreed on what our best option seemed to be. Steven would have to undergo brain surgery.
He had surgery at almost 7 months old. He had to have a 2 stage surgery. One to verify that we knew the exact location of the seizures, and two to remove the affected area. Unfortunately, Steven didn’t go without seizures long, and as a result of the first surgery, ended up with extreme left sided weakness, but we didn’t give up. We’ve had an amazing team on our side the last 6 years, and they have always made sure we knew we weren’t alone. As of today, we ended up going thru a total of 5 surgeries. He will be 7 in October, and attempting to live his life to the absolute fullest. Steven started off having over 200 seizures a day, and while we haven’t reached our moment of seizure free yet, we have minimized our numbers to roughly 10 to 20 a day. He’s in 1st grade, he loves going to school, and making new friends. He loves to sing, swim, play games, and watch movies. He recently received a letter home from school, about soccer. He wants to join! He also has a little sister who is in gymnastics, and every week he begs me to let him do it too. I can’t. He’s not able to. There’s too high of a risk, and I’m too afraid to overlook these risks.
About two years ago, Steven was diagnosed with a rare genetic mutation. Less than 20 people were known to have this mutation at the time, which leaves little to no research done for this. We fight and fight to find the research and help from our communities to get to what we need. We need the research, but research isn’t free. Each year, we as a family hold events in north and central Florida, to help the Epilepsy Foundation of Florida, raise money for these causes. So many people suffer every day. We all deserve answers, not just Steven, or myself, nor my family alone, we all do. Alone we can’t change the world, but together, we can do anything. I share our story any chance I can, to simply educate. You never know when someone is out there listening, that wants, and is able, to change lives. I’ll never give up!