Meet Bella — Stroke at age 3
Bella’s mom shared her heartbreaking story with us in 2016.
It has been almost five years, and still if I think about it too much I can’t breathe. I am the mother of an angel. My beautiful, kind, intelligent, loving best girl has wings. My heart aches everyday for my Bella. There is not one thing that I do not miss about her. God told Mary that she would be “pierced to the depths of her soul.” I have tried to explain when asked about how I am feeling, and I cannot find better words to describe how I feel than that. I am living my worst fear, but I would not change it because that would mean either I never had her to begin with, or I somehow could take her out of Heaven. Both of those are not options for me. She is my daughter, my best girl, and she is worth all of this pain. She is worth the tears that are always just below the surface. She is worth the odd questions that I sometimes get, and the moments where I just need to be Bella’s Mom and cry. She is worth it all. She has given me MANY more smiles than tears and memories that distance, hurt, and time cannot take away. She made me a mommy. Becoming a mother is the best thing that has ever happened to me, and a role that I deeply cherish.
I daydream about her almost 8-year-old self. What would she look like? What would she enjoy doing now? Who would she be? Undoubtedly she would still have that same angelic voice, that innate sense of right and wrong, those soul warming hugs, and that smile what would light up the whole world.
On September 17, 2011 I wanted my life to end. She had just entered Heaven and I wanted to go with her. God had other plans. Seven days before on September 11th my daughter had pediatric strokes and seizures. The day before that, she was fine. She was healthy, and playing with her cousins.
At 2:15 am on September 11th I woke up to Bella moaning. She asked me to ”pick her up and walk” – I knew that she wasn’t feeling good when she asked me that. Soon after she started vomiting. She got some on me, and in her sweet Bella nature she tried to clean me up and was apologizing. I told her that, “everybody throws up and it’s ok.” Like any parent would we thought it was a stomach bug, and planned to let her sleep it off. We gave her Tylenol, and the typical crackers, water, and Gatorade. We were out of town visiting my sister, and we were supposed to go home that day. We tried to wake her up like we had been to check on her and give her something to eat and she wouldn’t fully wake up. It was then that I knew something was wrong. I called the Redi Clinic to see if they gave IV’s because I thought she was dehydrated. Right about the time I got off the phone with them Calvin came out carrying Bella saying she needs to go to the ER. The three of us loaded into the car and I drove as fast as I could. My husband is former Air Force Combat Search and Rescue (CSAR), and is able to stay calm in stressful situations. His and others’ lives depended on it. When we got in the car and he not so calmly told me to “GO!” I knew that it was far worse than I had thought.
Something you have to understand is that Bella was an exceptionally intelligent child. She was only 3, but was far beyond that of a typical 3-year-old. Because of that, Calvin would ask her questions to keep her awake, and she would answer correctly, but in a whisper. She would tell Calvin, “Daddy I don’t feel good.” That’s important because I have thought and thought about what we did wrong, and I know in my heart if Bella knew it was her head she would have said, “my head hurts,” or something along those lines. She felt so bad she couldn’t pinpoint it. As a mother that is agonizing to live with. I see my role as not only to protect her, but to fix things, and to make her feel better. I couldn’t fix it. I failed. I cannot fully comprehend the thought that she felt so bad she didn’t know what hurt. If I could I would break.
We got to the local ER and were blown off. We were forced to wait with our limp daughter in our arms. She had a 102 fever and could barely stand when she was assessed, but we were still forced to go back to the waiting area. I say forced because I was not the picture of calm. I was upset, and extremely frustrated with the lack of care she was getting. My mommy instincts were on fire. We debated going to Arkansas Children’s Hospital (ACH), but we were not sure if she would make it there. Plus, we didn’t know exactly where it was. When we were finally called back and she was given sugars because hers were low. Not too long after that she had her first seizure. I was in the restroom, and came back in and my husband told me to go get a doctor. I did and they didn’t believe us. As I said before, my husband is former CSAR, and we are both educated adults. We know what a seizure looks like. She was able to talk after her first one telling me that she “had to go potty.” You have no idea how many times I have wished that that seizure had been the only one that happened. I crawled into bed with her because she was scared, and honestly I was too. Right before her second seizure happened she said, “Mommy!” Not a typical mommy, but a “Mommy help me… I’m scared mommy.” That was the last word she ever said.
Her second seizure is what is called a tonic-clonic seizure. It happened while I was holding her, and then she went limp. I crawled out of the bed, and I wanted to scream. I’ve NEVER been so terrified in my life. It took a while for the ER pediatrician to finally come in. They ran a CT scan and the radiology report said she had to no swelling and was neurologically fine. It was 100% wrong. Even the pediatrician noted in his records that it did not look fine. I thank God for him trusting his gut and calling ACH. They put her on a ventilator to transfer her, and I was able to ride with her in the ambulance. I had to sit up front because I was pregnant with her little brother. I remember talking loudly so Bella could hear me. I wanted her to know that she wasn’t alone and mommy was with her. It was the longest ride of my life.
When we got to ACH it took us a few hours to see her as they worked feverishly to stabilize her. They read the exact same CT scan she had done at the ER and saw brain swelling and pediatric strokes. Her swelling was so significant that her neurocranium had begun to separate. They immediately wanted to do a brain bolt (to drain out excess cerebrospinal fluid) and a central line. I asked the neurosurgeon if it were his daughter would he do it. He replied, “yes,” and so we immediately signed the paperwork for the procedure. We almost lost her while they were trying to place the central line. That night I didn’t sleep. The staff at ACH Pediatric Intensive Care Unit (PICU) is nothing short of amazing. Her night nurses, Chris and Logan, worked harder than anyone I have ever seen. They sat down maybe twice. They worked tirelessly to get her through the night between all of the alarms going off and the beeping from the different machines. Looking back now that first night of ups and downs would set the tone for the rest of the week.
That week was a terrible roller-coaster ride. Feelings of joy because of improvement and bone chilling fear because her brain swelling would not go down, her blood pressure was too high or low, or her heart was not functioning properly. I cannot say enough kind words about the staff. Every procedure she had whether it was a scan or a surgery someone would give her 3 squeezes. In our family that means I love you. It was important to us that she knew that. Someone who loved her was with her 24/7. She was never alone. My family rotated on shifts after I was kindly forced out of the room to sleep and eat. After days of not improving like the head neurosurgeon, Dr. Grabb, would have liked we decided to do one last procedure to try and save her life. It was our Hail Mary, and we needed this one to work.
It was around 2am when she went into surgery. I was so exhausted I had passed out on the floor of the surgical waiting room. When the phone rang to give a surgical update I jumped over chairs to get to the phone to hear that they had started and she was OK. They did a procedure called a decompressive craniecotomy by removing a section of her skull to allow her brain to swell in hopes of preventing further damage. It didn’t work. Her brain kept swelling. No one knew why. We still don’t. Every medicine, every procedure, everything they tried didn’t stop the swelling. On September 17th her kidneys started to fail, and she had to be put back on her heart medication. Dr. Grabb came in and performed a vasovagal response, causing pain that would bring a grown man to his knees and Bella had no pupillary response. Her body had started to shut down, and we were unsure if she would make it through the night.
All I wanted to do was hold her, because for 7 days I had not been able to. Some days I was not even allowed to touch her because her Inter-cranial Pressure (ICP) would go up and they could not get it back down. There is a limit to how much medicine a tiny body can get.
I crawled in bed with her while we listened to her favorite songs and watched her favorite shows. We read her books, painted her nails, dressed her in the perfect nightgown to twirl around in, and she wore a crown of flowers with ribbon cascading down her beautiful curly hair. Bella’s bed was surrounded by people who deeply love her.
Before she went to Heaven I asked her to let me know that she got there. When we walked out of the hospital we saw the most beautiful sunset, with rays shooting down to the Earth and up towards Heaven. Golden bursts of yellow, orange, and red filled the sky. The little girl who I called angel from the second she was born had received her wings. She made it, and God let us know.
It took us two years to figure out what caused Bella’s brain swelling. After extensive testing while she was in the hospital and afterwards we had no answers. We still don’t have an exact one. We know that a virus caused her brain swelling. We don’t know what that virus was. We know that her brain swelling caused her to have seizures and strokes, and that she would not have had either of them without it. We have since heard of similar cases, both adults and children, and they do not have an answer or favorable outcome either . Something hurt my daughter, and I refuse to let whatever that was be the ending to her story. Bella was and is too amazing for that. Her instinctive kindness inspired my husband and I to found her 501(c)3 foundation, The Bellaflies Foundation. We wanted to help other children and families who had been affected by pediatric strokes. We want to provide hope for them. We know that sometimes hope is all you have to go on, and we wanted there to be more that physicians were able to do to help before they said,” we have done all that we can.” We don’t want another family to hear those words, or walk this path. Bellaflies is committed to funding pediatric stroke research and education, promoting pediatric stroke awareness, supporting children’s hospitals, and helping improve pediatric stroke medication and testing worldwide. Making a Positive is our motto because that is exactly what Bella’s life did for us, and what she would want us to do in honor her.
