Half a Brain
I’ve managed to retain almost everything as it pertains to Mia’s initial injuries and health, but as time passes, some of the details get a little hazy.
I am unable to recall when Mia’s seizures actually began. I remember being told she was seizing initially, and upon arrival to the hospital. I also remember that wasn’t determined until she was under EEG monitoring. The result was Mia being placed in a medically induced coma as she was having subclinical seizures (a seizure that does not present any clinical signs or symptoms). The team did this in an effort to allow her brain to settle and reach its peak swelling after the traumatic event. With this, Mia was placed on anti-seizure medications in order to suppress them. Once Mia had been seizure free for twenty-four plus hours after her initial surgery, she was taken off EEG monitoring. She would remain on the medications for maintenance purposes, for years to come.
Once Mia had been discharged from the hospital (June 2017), I started noticing behavior that I questioned was neurological. I was not completely sure if they were seizures, since hers were subclinical. After several weeks of this increased behavior and consulting with my family, I made a phone call to Mia’s neurologist to discuss my concerns. At the appointment, Mia unfortunately did not exhibit the concerning behavior, but based upon our discussion, Mia was scheduled to have an overnight video EEG study completed at the hospital.
The study ran over the course of four days, and it was determined that Mia was in fact having seizures daily.
For Mia, a seizure starts with a body jolt (as if you are startled), with an immediate forced head turn to the left, forced eye deviation to the left, and either a left, right, or both arms shoot up in the air. At that time, Mia’s seizures were extremely short, ranging from two to eight seconds. The study required for the team to reduce Mia’s anti-seizure medication, to create an onset of seizures in a controlled environment. Her doctors increased her medication, scheduled follow up appointments, and encouraged me to call if there were any changes.
We danced this dance for over a year, as Mia’s seizures and frequency grew progressively worse.
As her seizures worsened, new medications would be added to our regimen while adjusting her existing, to create the ideal level of strength and balance. Each time our regimen would be adjusted, we would experience a “honeymoon” phase, where the seizure frequency would dramatically decrease, before spiking, and then leveling out. At one point, Mia was on four different medications to suppress her seizures. Not only did the frequency increase, but the severity. We saw some seizures triple in duration, and watch as Mia’s behavior would change following them. There were times she would cry for almost half an hour after a seizure, versus typically resuming normal activity.
In December of 2018, the frequency of seizures increased drastically from five on average, to fifteen. After consulting with her neurologist, it had been determined that Mia needed to begin seeing an epileptologist. I grew nervous and anxious as we discussed a rough plan of action that may take course. In previous months, we conversed about surgery being an option. We addressed that this would be likely, as there may be some scarred tissue causing her seizures, that would require removal. Her neurologist reminded me that the epileptologist would likely adjust Mia’s medications, and discuss a surgical plan of action concurrently.
As time drew near our appointment with the epileptologist, I grew increasingly anxious, as I was terrified a the idea of another surgery.
We met the second week of January 2019. I brought along my mother for moral support, and to have a second ear in the room. I always recommend bringing a support with you to big appointments, as things can become very emotional very quickly. It is also nice to have a support hear information from medical staff first hand. Lastly, this helps fill in any missing information you may have, after leaving the appointment. Sometimes as parents we fixate on one detail, and need help seeing the whole picture.
The doctor was extremely thorough in gathering history from me to determine timelines, exactly what her seizures look like, when they changed, medication changes, and so on. I had never met a doctor that took such great time listening to me give history. After getting her history, and explaining to us the kind of seizures Mia has as it relates to her trauma, our options were discussed. Her doctor very frankly, but empathetically told us that there was little to no chance controlling Mia’s seizures with medication alone. That due to the severe trauma, which was described as a “global brain injury”, surgery would be needed in order create seizure freedom for Mia. We discussed that the remaining scarred tissue from Mia’s injury would be removed, or disconnected from the left hemisphere. The concern was that Mia’s seizures, (by this time averaging twenty a day) was greatly inhibiting her ability to reach developmental milestones. It was explained that her seizures began on the right hemisphere, but spread to the left, healthier hemisphere, causing great disruption in her neurotransmitters. I remember asking how Mia’s case compared to other patients that have post-traumatic epilepsy. I was told that most who had similar injuries from non-accidental trauma, were bed bound, and that the surgery could be the catalyst to help Mia soar in her development, given that she is doing everything, no one thought she ever could.
When I asked how large of a section would be considered for removal or disconnection, the doctor pulled up Mia’s most recent MRI. even to an untrained eye like mine, the image was absolutely devastating. The abnormalities of the right side of her brain were so apparent, yet unbelievable.
Image of Mia’s brain from a recent MRI scan. This is an aerial, mirrored view. No tissue was removed-this shows how greatly damaged her brain is even before the recent surgery
I had previously seen images from Mia’s MRI’s. However, it wasn’t until that day, in that context, that I truly understood the gravity of it all. All of the right hemisphere would need to be removed or disconnected from the left. We discussed how her injuries left much of the right hemisphere severely damaged to the point of non-regeneration, with little to no viable tissue present. The surgery would prevent the left hemisphere from further damage. An apple analogy was used to help us further understand. If there is one bad, moldy, rotten apple in a bucket of good apples, what will eventually happen to the good apples if you do not remove the bad apple?
With Mia’s seizures worsening at a progressive rate, I made the decision to pursue surgery. This was was 100% my call to make. We discussed what life would potentially look like for Mia without the surgery. One of the anti-seizure medications that Mia takes is a controlled substance, which has the potential to drastically, and negatively affect her mood. Additionally, all of her medications makes her very drowsy after administration. The thought that she was only two, and yet three medications still didn’t sufficiently control her seizures, made it unimaginable to think of the amount of mediations she would eventually require, and how it would greatly inhibit her daily activities. Upon agreeing to surgery, there would be a pre-surgical evaluation completed to determine if Mia’s seizures were still localized to the right hemisphere. After the evaluation, a board of doctors would conference to discuss her case, only moving forward if a consensus would be reached.
Hours after the appointment i found myself crying UNCONTROLLABLY in my car. ths was the first time her neurological health had been presented to me in such a way. i was devastated.
“Why is this happening to her, to me?” “She does not deserve this!” “How is it that my Lovie has to live with half a brain?” “Why is everyone acting like this is so normal?” “Who do you know with half a brain?” “I HATE HIM [her father]!” These were some of the thoughts I had during the breakdown in the car. But despite my devastation, I did not reconsider surgery. A lot of information was given to me at once, and it was a ton to process. In the following weeks the evaluation began with an overnight video EEG sleep study over the course of five days. During this study, Mia’s medication was again reduced to ensure that her medication was masking a seizure time, or origin location we had not seen previously. Prior to discharge, Mia went for a MRI to get current images of her brain. Lastly, that Monday, we met with a neuropsychologist. This was to assess Mia’s current functionality, and determine any potential deficits she may face as a result of the surgery. Two hours later, it was discussed that Mia likely would not experience any new deficits as a result of the surgery, and if any, would be in areas that Mia already has deficits. It was also explained to me that Mia’s right hemisphere was so damaged, that the left hemisphere had already overcompensated, and had been functioning almost independently of the right. This truly helped ease my anxieties as it became clear that Mia would not be ‘starting over’. That this surgery, was necessary to give Mia a future free of seizures and medications.
Months went by, and in late April, I received a phone call from her epileptologist informing me that the consensus was unanimous, and the recommendation was to move forward with a Full Functional Right Hemispherectomy.
They detailed that the origin of Mia’s seizures spread from the back of the right hemisphere near the occipital lobe, to originating in the front of the hemisphere, near her temporal lobes. This indicated that some tissue that appeared healthier and less damaged, was in fact part of the problem, indicating the need for the full hemispherectomy. I soon met with the neurosurgeon who would be performing Mia’s surgery, to go over final history, explain the surgical technique that would be used, answer any final questions, and ensure that I was still onboard. The surgeon decided to take a less invasive approach, and simply disconnect the two hemispheres at the corpus callous. This would leave the damaged tissue, preserve blood flow, and to cut down on recovery time, all while isolating the left hemisphere. The right still very well would seize, but it would be of no harm to the left, as the two sides would no longer have communication. The surgeon assured me that Mia would do extremely well, and that there was no concern for any major function loss, aside from some additional left-sided weakness and maybe a further reduced left visual field. The surgeon was informative, patient, and confident. I felt this was the right move.
surgery was may 10th. i remember shaking, feeling sick, and short of breath the night before, and morning of the surgery.
I was terrified that something would go wrong. Would this be the last time I see my Lovie? Would she wake up a different baby? Would she remember me? It’s funny how all the testing and logical thought processes go out the window, and you’re left with motherly fears, rational or irrational, despite the months of preparation leading up to that very moment. The surgery lasted around seven hours. She looked amazing afterwards. Still out of it from sedation, I examined her incision, all her beautiful hair still perfectly in tact, and her sweet, sweet face. Her epileptologist came by to examine her before they took her to a followup MRI. She woke up briefly, and showed no apparent signs of any deficits, as she reacted to touch, reached for the instruments, and tracked my voice.
MRI imaging came back as expected and Mia was transferred to the surgical nursing floor from the PICU (pediatric intensive care unit), where she would remain for five days prior to discharge. There had been no evidence of seizures. The plan leaving the hospital was for Mia to remain on her anti-seizure medications as prescribed. Eventually, she would come back to the hospital for more video EEG monitoring to ensure she is truly seizure free, before slowly weaning her off her medications.
Surgery seemed successful without complications… or was it?
*Part Two coming soon