Bella: Stroke At Age 8, Alabama
July 13, 2016 is a day that will forever be remembered in our family. Before July 13, our daughter Bella was a healthy 8-year-old girl with no health issues. She loved competing in pageants, cheerleading and playing with her friends. However, as the saying goes, everything can change in the blink of an eye.
We arrived at our play date at 10:15 AM. All morning Bella was normal, tired, but nothing unusual as she is my night owl. She was cheerful and talkative. My last memory of “pre-stroke Bella” is of her skipping from one side of the room to the other, going to another inflatable to conquer it, long blonde hair bouncing behind her and a huge grin on her face. Not 2 minutes later, I see her trying to make her way to me, right foot dragging, right hand trembling and right side of her mouth drooping. Bella was trying to talk to me, but she couldn’t make any words. All that was coming out was a moan. I picked her up and immediately she went limp. I called 911 and they sent an ambulance to us. The operator assured me she was having a seizure, nothing too serious and I prayed she was right.
When the paramedics got there they immediately started working on Bella. They loaded Bella up into the stretcher and I got in the front. We headed out to the hospital in Birmingham, AL. When we got about a mile and a half down the road, Bella started to throw up. It was all consuming, you could see her entire body heave, and could tell that she had no control over herself. We pulled over and waited for a fireman, in case she had to be intubated. We needed someone familiar with intubating a child.
While waiting on the fireman, I could hear the paramedic trying to get Bella to open her eyes and keep looking at him. When the fireman arrived, we continued to the hospital. When we got to the ER, we were immediately taken in and put in a room where doctors and nurses started working on her. Her eyes were closed and she didn’t respond to my voice anymore. Bella vomited 3 more times in the ER, each time her body convulsed and it took more and more out of Bella. She was still moaning every so often and moving around in pain. Once the ER staff got her hooked up on IVs, she couldn’t fight it anymore and went to sleep.
We went to get a CT scan and it didn’t show anything abnormal with her brain, something we were happy for in our naivety. Had we known, we would understand that a CT doesn’t show a stroke that early on. While it was a great thing that we all acted quickly getting Bella to the hospital, a stroke would not show on a scan until hours later. Bella’s right side of her body still wasn’t responding to touch or pain and her face was still dropping. At this point we were told she had “focal seizures” and we weren’t sure what caused them, but they were still testing.
The Pediatric Neurologist that was on call that day was amazing. She felt something was off with Bella. She kept coming back for more tests, examining Bella, asking a lot of questions, and never giving up. At first, we thought maybe she had meningitis, so the ER staff did a Spinal Tap test. Bella still hadn’t spoken and could not respond to any commands. At this point, it had been 5 hours since I first noticed the symptoms. Suddenly, the atmosphere changed in the hospital. Our neurologist rushed in and said they were taking Bella down for a quick emergency MRI, and we would talk afterwards. I was allowed to stay in the room with Bella to calm her in case she woke up, but she never did. She slept through 5 minutes of the noisiest test I had ever heard.
Everything began moving so fast and multiplying quickly. Instead of one Neurologist, we had a team of Neurologists, and one was from another local hospital. As they called us out to look at Bella’s scans, we could see the look in their eyes that this wasn’t news they wanted to deliver. They told us that Bella had suffered a massive left MCA stroke and a blood clot was stopping blood flow from getting to most of the left side of her brain. Looking at her MRI scans, you could see exactly where the clot was and exactly where the dead tissue was too. The team told us we had 2 choices. The first was to try to treat the symptoms medically. However, we were at the point of time since the stroke occurred, that it probably wouldn’t do her much good. No guarantees, but all the doctors agreed with that.
The second choice was riskier. We had a small window of time that we could try to go in and remove the clot. However, a thrombectomy had very rarely been done on a child, and this hospital wasn’t even set up to perform one. There was plenty of data for this type of treatment for adult stroke patients, but little to none for pediatric stroke patients. However, we knew they this was our best shot at saving Bella and giving her the quality of life she deserved.
We decided to go with the thrombectomy and we literally ran through a maze from the inside of the current hospital to the operating room at another hospital that was set up for it. There was no time to waste. The surgery was supposed to take 2.5 hours, and it did. The doctor removed part of the clot, not all of it, but we are thankful for the partial removal. It restored blood flow to certain areas of the brain that had been starved for who knows how long.
We were warned that after a stroke, the brain CAN swell, that they would keep an eye on it, and deal with it IF it happens. Well, IT HAPPENED. Bella had been placed on a breathing tube after the surgery because no one was sure if her brain would tell her body to breath on its own. On Friday, June 15, the PICU doctors decided it was time for that breathing tube to come out. Bella’s vitals had remained stable the whole time, which was a good sign.
When they pulled the tube, Bella was very irritable. She rolled around constantly, still didn’t speak, just moaned. During a neurological check an hour after pulling the tube, the PICU doctors noticed her left pupil was bigger than her right. Immediately we knew something was wrong. The doctors took over Bella’s room, and quickly told us that Bella’s brain was swelling and the left side of the brain was pushing the right side over and causing pressure on her brain stem. Obviously, this needed to stop, so they prepped her for a decompressive craniectomy. The neurosurgeon removed part of her skull to allow her brain to swell and release pressure. I remember asking a doctor in the PICU if this was the best way to help Bella and she looked me in the eyes and said “this is the answer, we just have to make sure we caught it in time”.
All we could do at that moment was pray. My husband and I were told the surgery would take 2.5 hours. With every passing minute, the saying “no news is good news” rang true. 2.5 hours later, almost to the second, we were called back to a private room. The neurosurgeon told us that the surgery went great, and when they removed her skull, her vitals stabilized and she stayed stable the entire time. He informed us that they removed her whole left side of her skull to allow Bella’s brain to swell. This wasn’t a surprise to us, because the stroke damaged almost the complete left side of her brain.
The stroke left Bella severely weakened on her right side. She could not move any part of her right side, nor could she walk, or talk and was later diagnosed with Broca’s Aphasia. A few days after her stroke, Bella started 3 hours a day of physical therapy, speech therapy and occupational therapy. The right side of her face was affected by the stroke. However, we did see small movement on different parts of her face as time went on. After a few weeks of therapy, the transformation that was happening with Bella was amazing! In less than two weeks Bella was moving! Therapists were feeling movement in her muscles on her right side of her body and her speech therapists was discovering her memory was strong. She could repeat back some words. She was fit with an AFO brace for her right leg, and a sling to hold her right arm. Bella first started walking with a specialized walker to support her right arm the week of August 1. After a week of using the walker, she moved to just a cane.
Bella was regaining movement in her shoulders and it was working its way down into her arm. She could voluntarily move her arm from side to side. Speech was/is her most frustrating therapy but she is making progress. Bella walked out of the hospital on August 15, 2016 with the assistance of a cane. We started twice a week outpatient therapy at the hospital the following week.
On September 29, 2016, Bella went in for her third brain surgery to replace her bone flap. Bella was very excited to have the helmet gone! Since then, we have continued with outpatient therapies two times a week at the hospital, and Bella has started back at school. She doesn’t need the cane, but still has an AFO. However, she can now walk without it on, and she’s continuing to get more movement in her hand. Speech is slow to come back, however, she can now say 2-3 word sentences. Which is a huge improvement because when we left the hospital she couldn’t express anything, just repeat what was said to her.
The past 8 months have been tough, however, one thing stayed the same, Bella’s determination. Kids are so tough and resilient, she makes me feel weak. Her strength has inspired me. Instead of sitting around crying and asking “why me”, she’s constantly working on getting her life back. She doesn’t allow her inability to communicate to stop her from hanging out with her friends. She still plays ball with her brother and cousins and jumps on her trampoline. She doesn’t hide her weaknesses, she proudly puts them on display and works hard to get better than she was yesterday. She has a long road of recovery ahead of her, and instead of worrying about it all, she chooses to embrace it and give it all she’s got!
From the beginning of this journey, we have been blessed with wonderful physicians. They truly care about Bella and want to help her recover and heal as much as possible. They all hold a special place in our hearts, however, we know without a doubt that Bella’s story would have been very different if our local hospital hadn’t had a Pediatric Neurologist on call. That doctor kept asking questions, running tests, ordered the MRI and never gave up until they discovered Bella’s blood clot and stroke. Having a Pediatric Neurologist on call in the room with us, fighting to find an answer to a neurological condition, was the turning point for Bella to survive her stroke and have an opportunity to heal and recover. The thought of what could have happened to Bella had her stroke not been detected is unimaginable and frightening. We will be forever grateful to the hospital and Bella’s Pediatric Neurologist.
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