I want to change the world. Well not the world per se, but the world of Heterotaxy. I want to change the way this condition is looked at, the way it is treated, and the way doctors and facilities discuss treatments with the families of children effected by Heterotaxy.
Heterotaxy is a spectrum disorder (even though it is not classified as that). My daughter has heart defects, and abdominal defects. Some children get one or the other. Even in these, no two children are alike. They are similar, but their anatomy is strictly their own. Heterotaxy must be treated differently.
I get a lot of backlash cause, well, I speak my mind. I tell it like it is. But I research and research topics. I look at how vascular anomalies can affect the way the heart functions and what certain palliation's can increase the risk for these vascular anomalies. I am no doctor, and have no college degree, but I guarantee you, I know what I am saying. I look at Porto systemic shunts and different variations of them and how they can be ligated to change the way a child with Abernethy Malformation lives.
I want to change the world.
Alexandra asked me the other day "Mommy what do you wanna be when you grow up?". Well back in my younger years I always wanted to be a teacher. To me knowledge is power. Knowledge and reason are what helps a person explain life around them. When I think about what I want to be now that I have had the opportunity to be exposed to the wonders of the medical world, and the miracle of my daughter, a fire inside my heart grows. I will never be a doctor, and I dont really want to be one. I dont want to be a nurse. I want to stand side by side with doctors, nurses, and administrators who are working to change the world of pediatric medical care. I want to be a policy maker. I want to be someone who sits at a table and looks at the data presented and discusses how this changes the way we need to take care of these patients. I want to help continue to keep these children alive and help their quality of life.
So I sit and I research, I post to Twitter and get all kinds of organizations to follow me, in hopes that someone will notice me. In hopes that someone will say "hey join us".
You see my daughter has endured 5 open heart surgeries and an abdominal surgery. She is a single ventricle with a common atrium, malposed great arteries, right aortic arch, levocardia, interrupted IVC, pulmonary stenosis, and nearly discontinuous pulmonary arteries. Then she has this thing called Abernethy Malformation. Congenital absence of the portal vein. She has severe pulmonary AVMs because of her anatomy. She has been denied a liver transplant twice. She is hyperammonemic, and has elevated liver enzymes. I have been told that she would need to have a heart/lung transplant, then a liver if her new lungs formed AVMs. None of this would have happened if the proper imaging would have been done on her to check her liver for Abernethy.
I want to change the way Heterotaxy is treated. I dont blame anyone for what has happened to Alexandra. Its just lack of knowledge. But that knowledge is out there, and I have it. I want to share it with centers and facilities, and advocate for these children. I want to help create policies and protocols as to how these children are treated.
I keep on talking about wanting to move on with life. Its because even as I continue on to finish my teaching degree, its not what I really want. What I really want is to advocate, professionally. I know I can do this. The fire inside my heart tells me so.
Maybe someday, somehow.