Many have asked "what is an AVM?" When the neurosurgeons first made us aware of what we were dealing with, I had the same question. I have heard of aneurysms, but an AVM has never been on my radar. Now, it is something I am learning more about everyday and will forever be a part of my vocabulary.
An AVM is an Arteriovenous Malformation. In my very basic laymen's understanding, the best way I have learned to describe it is as a large tangle of blood vessels and arteries. Typically, arteries carry oxygen-rich blood from the heart to the brain, and veins carry blood with less oxygen away from the brain and back to the heart. When an AVM is present, arteries bypass their normal path and carry blood directly to the veins. Because of the tangle of veins and arteries, the pressure flowing into the weakened veins can cause hemorrhaging.
What happened to Ella was possibly the most catastrophic scenario involving an AVM. Not only did she experience the rupture, but the AVM was located deep in her brain tissue and situated near her brain stem. As a result, the bleed was massive and it greatly impacted her brain stem. Because the bleed was so large and so deep, her faculties began to shut down quickly and our response could have never been fast enough to spare her life.
As a father, it is very hard for me to look at what happened to Ella and say "it was her time." She was only ten years old. She had a life ahead of her. She had only begun to live. The reason it is so difficult for me to understand is because I see things through selfish emotion. My use of the word "selfish" is not with negative connotation. Instead, I recognize it as having been built in us as parents. It's what makes us sacrifice for our kids. It's what causes a parent to do without so their child can have something they want or need. My selfish emotions concerning my child cause me to turn a blind-eye to everything else and focus only on what's important for her. Therefore, as her daddy, it's hard to say "it was her time." However, when I stand on my tip-toes and peer over the fence, I catch a small glimpse of how God is using her death to impact the lives of hundreds, maybe even thousands. When I see the other side of the equation, I can't help but confess that God's will was done when He called her home. Thus, it was her time. What makes my conclusion even more clear are the stats concerning AVMs.
According to the American Heart Association and the American Stroke Association, AVMs occur in less than 1 percent of the population and are more common in males than females. They are typically congenital, meaning you are born with it, but usually not hereditary. There is no known reason why an AVM may occur. Out of that less than 1 percent of the population, about half will actually experience an intracranial hemorrhage, and 15-20% of those will end in death.
When you look at the numbers, Ella's chances of this happening were so incredibly small. This is typically something you hear about happening to someone else. Yet, here we are, 3 weeks removed from the last day I heard her voice, the last hug, and the last "I love you". My family and I are looking into what is being done in the way of research to prevent this from happening to other people's babies. We are also contacting many organ donor awareness organizations to learn how we can help the world hear about how they can help save lives just like Ella did. We believe God took Ella for many reasons, and we refuse to silently let her go. We will do all we can to be her voice and to tell her story to all who will listen. I really believe we can change the world, and Ella will forever be the reason.
Do you want to be a part of the change?
If your answer is yes, then keep reading.
(1) SHARE this blog on all of your social media accounts.
SHARE it with everyone you talk to. Together, we can make sure Ella's story is told and lives are impacted.
(2) Click on the link and LIKE the Facebook page For Ella Kate to keep up with everything we are learning and discussing as a community. In the coming weeks and months I will be sharing with you what we have learned and how we are planning to move forward with awareness and research.
(3) Love people. Don't focus on your differences. Just love people. Love with the kind of intensity Ella loved with. Because the truth is we can find a cure for every disease known to man, but without love, this is still a sick and broken world.