What Is This?
When my husband and I were in the middle of a military move from Arizona to Maryland, we were visiting both sides of our families in Texas for the holidays with Audree, who was just over 3 months old at the time. We noticed Audree would have these events occur where things just looked off in her face and her limbs would stiffen or twitch. At the time, we weren't really sure what it was but started to get concerned as the events would happen more frequently and were increasing in intensity. We decided to take her to a hospital in Houston, where tests were run, and it was determined that she was having seizures.
At this point we're thinking, okay we can handle this. We knew people with epilepsy who had their seizures under control and lived regular lives. We were given some medication to start her on and told to establish care with a neurologist upon arriving in Maryland. So, onto Dallas we went to visit my side of the family. That is when things went downhill fast. Audree's seizures were happening frequently. She was turning blue with some of them. She would get IV loads of meds and continue to have break-through seizures. The hospital in Dallas wanted to run their own tests and try to figure out what was causing all of these seizures. That is when we were told of Audree's rare brain disease diagnosis of Hemimegalencephaly. We were given a description of how this disease effects one in a million, and it causes drug-resistant, uncontrollable seizures. We were devastated. What would her future look like? How do we stop the seizures? We're in the middle of a move across the country...how do we even get to Maryland safely? A million questions were running through our head.
Pause for a moment though....ever since we had found out we were moving to Maryland (we're both originally from Texas), we were questioning why God would move us SO far from family knowing we just had our first baby girl together and would want to be close to family. Answer: Johns Hopkins Hospital. This is one of the best hospitals for Audree's level of seizures that we could be close to in regards to being stationed at an army post. Thank you, God!...ok, back to the story.
After receiving this new diagnosis, we knew we needed to get to Maryland fast and establish her care there. The problem was, Audree wouldn't stop seizing long enough for us to make it through the flight without needing rescue meds or an IV load of meds. We got medication that would sedated Audreee long enough for our flight to hopefully supress the seizures. The medication worked! We made it to Maryland and to the hospital we went! We started talking to Neurologists and a Neurosurgeon and found out that a hemispherectomy is a surgery where they remove the half of the brain that the disease is in, in hopes that it will stop the seizures. Wait, you can remove half of a brain and still live? That's possible? But what does life for her look like after? Will she be paralyzed? Will she be able to walk or talk? So many questions running through our heads.
Matthew and I started getting on social media, researching this disease, trying to find someone who knew about this disease or had a child with this disease that could talk to us. This is when we found a Facebook group that had all parents of kids who had this disease. This was a HUGE blessing. We started reaching out to people, reading other families stories, talking to families whose child had been through the surgery we've been told about, and what kid's futures with this disease looked like. After speaking with a few families, we felt confident that we should go through with this surgery. That Audree's quality of life without this surgery would be worse than if they did the surgery. So at 10 months old, they removed Audree's left side of her brain. Laying your child in a surgeon's arms, trusting them with her life, and hoping she pulls through is one of the hardest things we've ever had to do. We turned to prayer. We put our hope in Audree's remaining half of her brain to sustain her and put our hope in God to protect her.
There was rehab both inpatient and outpatient. She lost the ability to swallow so she had another surgery to insert a feeding tube into her belly...recovery was hard. It was slow and there were set backs, but our girl was alive and we were celebrating that. There are so many side effects to having this surgery and we still face challenges daily, but putting our hope in this surgery to give her a good quality of life we know was the right decision. Today, Audree is 9 years old. She faces many challenges such as partial paralysis of half of her body and within the last few years she has been diagnosed with autism (which is a whole new world and explanation for so many things we've seen over the years and now we know the diagnosis and how to help her!). Unfortunately, Audree still has seizures. The disease has crossed over to the right side of her brain and so now she endures daily seizures that we are still trying to find a way to control. Is this a story with a happy, perfect, all is healed ending? No. But, do we have hope for her future and hope that God has a purpose for her to use her story for good and to help others?...absolutely. I will continue to cling to that hope to get us through the hard days.