“When Damian was born, we knew it was only a matter of time before he developed epilepsy. After his first MRI at 1 day old, we were told by the NICU doctors that it was more if a when’ than an ‘if’ situation. Due to the amount of damage on his brain, everyone was sure it was going to happen.
Before Damian was born, very early in gestation, he suffered from multiple catastrophic strokes. Strokes so massive, they could’ve killed him. Doctors were surprised. Most of the time when something that major happens in the first trimester, the pregnancy ends in miscarriage. But Damian was a fighter before we even knew I was pregnant.
At our first ultrasound, his brain already looked ‘abnormal.’ At first, we thought he had an accumulation of cerebrospinal fluid (Hydrocephalus). In my 3rd trimester, I underwent a fetal MRI of his brain. After that, it was clear Damian had suffered from strokes and the fluid was just filling in the dead parts of his brain.
The day before Damian turned 5 months old, he started having seizures. To be honest, I had no idea they were seizures in the beginning. They were not like what you see in movies, there was no shaking or convulsing. Instead, his little body would stiffen up for just a few seconds. One evening, it was happening fairly frequently. I could see that his eyes would get glassy and the skin around his mouth would get slightly purple. It then hit me that these very well could be seizures. And at that point, we brought him to the ER.
Once we arrived, I checked him in and almost immediately a nurse came out to look at him. Only a few minutes passed, and they called us back to his room. Damian was placed on monitors at this point, and he had fallen asleep in my arms. Then he started seizing in his sleep. A family member who was with me ran out to call his nurse. The monitors were going off, showing that his oxygen was low, and his heartrate was high. His nurse came in, only in time to catch the very end of the seizure. At that point, they knew he was experiencing seizures, there was no doubt in anyone’s mind.
I felt a massive amount of guilt over the fact that I didn’t pick up on his seizures quicker. I didn’t know, I was not educated about what seizures looked like. I did not know that they could be so subtle.
That night, Damian was admitted into the hospital. They hooked him up to an EEG to track and record his brain waves. The next day, I asked the neurologist on-call if this means Damian has epilepsy. ‘Yes,’ he responded. It was official. We were sent home with a prescription for Damian and a broken heart for mama. It was hard to come to terms with the fact my baby did, in fact, have epilepsy.
For a few months, it seemed like the medication was working. No one ever told me what would happen if his seizures started up again. It’s not something I thought about honestly. In my mind, medication meant no more seizures.
On Mother’s Day of 2015, Damian went into Status Epilepticus (prolonged seizure) for the first time. We were getting ready for a nice picnic at the park when Damian’s arm began twitching. Soon, the seizure started to spread throughout his brain and all of his limbs were twitching. At that point, we called 911 for him for the first time. When Damian’s dad was on the phone with them, I held Damian’s limp body in my arms. He was unresponsive. I thought we had lost him. It wasn’t until that moment I truly knew what fear was. I looked down at his lifeless body as I heard sirens. They were coming for MY child, it felt unreal.
First the firefighters, then the paramedics. Then our house was full of first responders. They put some oxygen on him, and we rushed out to the ambulance, he was still seizing. We rushed to the hospital with sirens on. ‘8-month-old male in status epilepticus.’ The paramedic gave a heads up to the hospital.
As soon as we pulled into the ambulance entrance at the hospital, Damian finally stopped seizing. I can’t even explain how relieved I was. My baby was going to be okay. He was awake, but extremely agitated.
Once in the ER, he passed out. He got checked out by a doctor, and thankfully his vitals looked good. They told me to let him ‘sleep it off.’ He was in such a deep sleep that nothing could wake him. His little brain and body were completely exhausted. He got monitored for a couple of hours, and then we were sent on our way. We left with a prescription for a second medication…and also a rescue medication. We were instructed to administer it rectally for seizures lasting longer than 5 minutes.
I reflected over several days and realized how absolutely terrifying life with epilepsy really was. I had no idea. I thought he would take this medication they gave him, and that would be it. I was so very wrong. But I was so new to this. Damian’s two big brothers were healthy. And here I was, thrown into this new world. A world filled with fear, sadness, and confusion. The reality of having a ‘sick’ child really weighed on me, and I was always on edge.
Again, Damian had a good ‘honeymoon’ period on the second medication. He was doing well.
In October 2015, his neurologist ordered an ambulatory EEG after we saw some abnormal movements he was making. I didn’t think anything of it, but I agreed to it just to make sure everything was okay.
On Halloween afternoon, while we were at the park, I got a call from Damian’s neurologist. His EEG showed Infantile Spasms with Hypsarrhythmia. I didn’t even know what that meant. But all I knew was that his neurologist wanted him to start a course of high dose steroids the very next day. It was urgent. She told me that while taking this medication, he will have a very suppressed immune system. If he spiked a fever or had any sign of infection, we had to take him to the hospital ASAP. An infection while taking this medication could be deadly.
Once I started looking into his new diagnosis, I learned that Infantile Spasms is a rare and catastrophic form of childhood epilepsy. It was a lot to take in. But again, I was hopeful that the steroids would work for him.
Unfortunately, his EEG ended up showing that they did not help, at all. My heart was shattered. Why Damian? Why is nothing working for him? I wanted nothing more than to be completely done with living in this nightmare. I wanted to wake up. I wanted my baby to be healthy. I wanted him to live.
Our next step was an emergency initiation of the Ketogenic Diet. We spent a week in the hospital trying to get him into ketosis and learning all about our new ‘normal.’ We learned how to mix his Ketogenic formula with all of his supplements, how to crush and dissolve all of his pills (because the liquid meds contain sugar), how to check the ketone levels in his urine, when and how to check his blood sugar, and much more. It was hard on him. His nutritionist had to talk me down many times, because I was ready to give up.
But I’m glad we stuck with it and with time, we had a routine in place. As always, the ‘honeymoon’ period was good. We didn’t see many seizures, but his EEG still showed Hypsarrhythmia (a disorganized, chaotic brain wave pattern associated with Infantile Spasms). But he was thriving. Something we learned along the way was to focus on Damian, not the EEG strip. His brain waves will always be extremely abnormal.
Our world came crashing down on November 11th, 2016 when Damian had a seizure that lasted for over 3 hours. Again, I asked myself why. Why Damian? Why must my precious baby suffer? Why was he given such a hard life? All questions that there were just no answers to.
That 3-hour seizure seemed to have set something off inside of Damian’s brain. We started noticing that he was having small spasms daily. Then the spasms slowly evolved to longer tonic seizures. Soon enough, Damian started having seizures all day, every single day. Some lasting a few seconds, and some lasting a few minutes. And these were terrifying. Damian would get really stiff on the right side of his body, and his oxygen would drop really low (into the 30s), really fast. The whole situation grew out of control, and no medication helped. He lived in a vicious cycle… seizure, sleep, seizure, sleep. That’s all he did.
Seizures took over everything in our lives. We couldn’t go anywhere; we couldn’t live our lives without seizures being right there with us. They consumed Damian, and he had no quality of life. Every time he had a seizure, I held my breath. Scared that this one would be the one to take him from us. I lived in constant fear of losing my child. I knew something needed to be done.
After about a year of relentless seizures, many hospital stays, multiple week’s worth of EEG monitoring, countless failed medication and a VNS device, MRIs, and PET scans, etc., our team presented Damian’s case at their Epilepsy Surgery Conference. The thought of my baby undergoing brain surgery made my stomach turn, but it was our only hope.
Before we knew it, we were planning for him to undergo a palliative left functional Hemispherectomy. Meaning that his neurosurgeon would go in and disconnect the entire left hemisphere of his brain and remove his Temporal Lobe (and a portion of his Frontal Lobe). It was considered palliative because he has bilateral brain damage. But all of our testing showed the very large majority of the life-threatening seizures were coming from the left hemisphere. Our fear was that the right hemisphere would ‘wake up’ after we disconnected the left one. His team called the surgery a ‘leap of faith,’ but I knew it was the right decision.
August 13th, 2018 is the day Damian underwent his Hemispherectomy. We had to check in at 5 a.m. that morning. It didn’t feel real, I felt like we were in a movie. That whole day was a big blur. Damian’s dad and I waited anxiously in the waiting room, receiving updates from a very nice nurse every few hours. It was the scariest day of my life. But it was also the best, because it was the day Damian started living again.
After 9 excruciating hours, we were finally reunited with him in the pediatric ICU. He officially began living life with half of a brain. Damian’s surgery went extremely well, and for the most part, his recovery was smooth. We got discharged from the hospital after 2 weeks.
The surgery was incredibly successful, way more successful than any of us could’ve imagined. Since surgery, Damian has had a handful of prolonged seizures. His spasms have returned, and we are still trying to get them under control. But his overall quality of life has improved. Seizures no longer have him under their control.
I am beyond thankful that we decided to go forth with surgery, and our only regret is not doing it sooner.”
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This story was submitted to Love What Matters by Andrea Fierro of San Diego, California. You can follow her journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
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