As I write my first book and build my own website, both coming this summer, I think of all the subjects I want to cover. There are so many, I want to write a book with one million pages. Haha. Unfortunately, I believe people would get very tired and put it down. I am hoping to write a book that people will want to keep reading!
One subject I will not be adding to my book but would like to blog about is the permanent damage that CHD kids in the 80’s live with due to the lack of medical equipment, statistics and overall research that was non-existent. There is a list of these however I am focusing on Heart Catherizations and the long-term effects we now live with as adults.
Please see the video posted below to see
how Heart Catherizations are done now and the phenomenal equipment, small needles, big screens and amazing labs we are blessed with today! The video was taken at Johns Hopkins All Children's Hospital in St. Petersburg, Fl with CHD doctor, Dr. Gary Stapleton, featuring me asking a couple of questions in our awesome cath lab gear! ;P
Personally, Heart Catherizations is on the top of my list as far as the most damaging to me due to the destruction it did to my veins and blood flow. Having a ridiculous amount of heart caths in the first four years of my life destroyed my femoral artery and all the veins around it. My veins are left with permanent scarring and therefore my blood flow has a very hard time getting from the top half of my body to the bottom half.
Doing heart caths through the groin was the only way to check pressures and see what’s going on in our hearts. I have learned recently some CHDers got them in their neck and some have severe vein damage around their chests. The neck caths were never an option for me. As my doctor recently told me, the needles were double the size they are now, therefore doing double the amount of damage. Due to this many of us have permanent severe damage to our groins, neck/chest, pelvis, and some even have permanent back, groin, and neck/chest pain.
One of my CHD friends, Gabrielle who is also 31 years old with HLHS, has had similar experiences. She says “They didn’t think we were going to live, their goal was to keep us alive right then and there. We are the guinea pigs. Many CHD parents now who say they don’t do this procedure or that test anymore sometimes don’t realize it’s because we are the ones who were the ones they tested on and are living with the results. It’s no one’s fault. The doctors simply didn’t know. This is just the way it is.”
For example, with Gabrielle, when she turns it will throw her hip and pelvis completely out of alignment due to multiple heart caths through her groin as well. She also experiences back pain.
They didn’t know cathing us multiple times a week would have long-term repercussions and they weren’t thinking about what would happen later in our lives. They were thinking how can I get this child to not be another statistic of a CHD child who dies.
Now due to so many medical advancements we can look more at the child as a whole – as an emotional being who needs other things outside of just pure physical survival and we can now tend to those needs. This will create a stronger quality of life and hopefully a longer and happier future in the current CHD teens and children.
The trauma our parents went through is mind-boggling. No human should have to suffer through. Our parents did this with literally zero resources, no friends with CHD children, no statistics with doctors who had no idea what to expect either. My mother was begging the doctors to stop cathing me so much but it was the only way for me to survive and get the treatment I needed. I even had an experimental heart surgery that failed, but hey, they had to do what they had to do to keep me alive. I cannot imagine how horrifying this was to watch your child be tortured constantly.
This is why I speak and write a lot about the PTSD in parents and siblings who have it worse than us because they watch us suffer, where as we are drugged out in la-la land getting procedures and then eating popsicles and watching cartoons while in your minds all you see is us hooked up to tubes, getting stuck with needles and being in pain that we usually can't feel. Not to lessen what we go through, but if you were to ask me personally who has it worse, I always say it’s the people watching someone suffer than the person doing the suffering. This is actually a different form of PTSD than the one going through it. Especially as a child, we have no idea what's going on and we don't care to understand. We just want to eat ice cream and watch cartoons. As a teen and adult though, I believe it's equal suffering. Although it is debatable. You are free to disagree, that is my opinion. Feel free to read my blog with the link below regarding more on this topic, called Keeping The Innocence.
In regards to how often we get Caths now as adults - some CHDers get a heart cath every two to three years. Some like me, get them every 10-15 years or just when prepping for a procedure due the severe damage that was caused in the first 4-years of life.
We have come so far. We are the pioneers and first generation surviving with Single Ventricle CHDs and hope that what we went through can lessen the trauma that the current and future CHD SV families, children, teens, and adults will have to live through. The CHD survivors in their 40s, 50s and 60s without SV and born with other CHDs have paved the way for all of us.
We are Wildflowers with what I call Warrior Blood. I truly believe we were put here to be teachers, leaders, and healers. We are old souls on a journey to teach others around us how to appreciate life, a different way to experience love, and the little moments in life that many healthy people take for granted. We will take you to the depths of each emotion and grow like wildflowers. You can step on us, poison us, and neglect us, and we will grow despite carnal destruction. Our hunger to live and will to fight is that of a thousand men. We, just as wildflowers, will grow and flourish “even if growing where it would not naturally.” (Wikipedia definition of wildflower)
No human was meant to survive let alone grow under the conditions and medical and mental traumas we were exposed to. But what saves us is our spirit, our God, and our will to prove you wrong.
My book is for all CHD survivors, families and loved ones, doctors, and other professionals. Single Ventricle or not, we all struggle with very similar mental, emotional, and physical battles. Some less than others. Some battles leave visible scars, but most are on the inside. If only you could see what Warrior Blood truly looks like.
HEART CATH LAB TOUR: https://youtu.be/cWkpNdfjaE4
Feel free to check out a blog about why it's important to maintain the innocence in a CHD child by clicking here.
“Never doubt that a small group of thoughtful, committed citizens can change the world.
Indeed, it’s the only thing that ever has.”
– Margaret Mead
Thank you for your support.
Thank you for existing.
Your existence gives me hope.
Educate. Inspire. Heal.
Copyright © 2018 | By Stephanie Romer
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