Honoring First Generations of CHD Parents

In honor of my Mother’s birthday, I wanted to write a blog that is dedicated to the CHD parents of our generation.

Complex CHD patients like myself are living into adulthood for the first time and we are all paving the way, trying to build resources for ourselves and the future generations.

Our parents are now in their 50s, 60s and 70s and came from a time of being able to smoke a cigarette in the waiting room while their child was in heart surgery, with their extent of a social life being sharing stories with other parents in the waiting room or at the Ronald McDonald House who also had very sick children.

They came from a time of no technology and no cell phones. Therefore, no way of contact, aka no breaks, unless they were in the hospital or at home. This greatly limited their life whereas now when we are in the hospital they can go take a break, go to lunch with a friend, enjoy an hour at the beach or anywhere they’d like to be outside of both their home and hospital while still being able to hear updates through their cell phone.

When we were born with Complex CHD in the seventies and eighties, these heart conditions were believed to only be a terminal condition with no hope of survival. Some such as HLHS, HRHS are still known to be terminal conditions today. However, during those years doctors had never seen children born with our anatomies living at the most one year. There were no ways of reaching out to other parents to ask questions or talk to. There wasn’t the internet to look up any information. They strictly relied on the doctor’s opinions and lack of statistics. They were told we were going to die, and they took us home and lived their lives according to that opinion.

Most of our parents had never heard of congenital heart disease, or defects, and were surrounded by happy friends bringing their healthy babies home.

Terms like anxiety, depression, and PTSD were not understood or used openly as they are today. However, without knowing it, many of our parents were debilitated with fear, feeling alone in the world, and going through trauma that they didn’t know was trauma. It was just their life to them.

Without any information, statistics, adult survivors, or other parents with CHD, they were left alone to make the most terrifying decisions of their lives when it came to surgeries, medications, and managing our everyday lives when we weren’t in the hospital.

In my personal situation, they kept doing heart catherizations and trial heart surgeries to keep me alive until I could get strong enough for a heart transplant. However, when I was two years old I suddenly went into heart failure yet still wasn’t strong enough to survive a heart transplant and they needed to act fast. This is when the doctor’s at Cincinnati Children’s in Ohio suggested a new surgery to my parents called the Fontan. They said they hadn’t done it on many babies and so far no child was alive with this procedure past their toddler years to their knowledge but it is the best route to go right now to keep me alive, or we can risk a transplant. But they had to do something because I wasn’t going to make it.

My parents, only 23 and 24 years old, had to make the hardest decisions of their lives, again with zero statistics, zero survivor stories, zero CHD parent friends, zero resources. After meetings with the doctors and heart surgeon teams, they ended up choosing the Fontan.

(to learn what happens next and hear more of my parents and our family story read Quieting the Clock: Memoir of a Girl Facing Death and Chasing Freedom)

This is all they were given as the only resource in Ohio in 1985:

But this blog isn’t about me or my story, it is to highlight the soldiers and trailblazers our parents are for the CHD Parent Community.

All of our parents were faced with living a hell that they could have never imagined they would make it through.

They were forced to make decisions no parent, or human being, should ever have to make. They all went with their best option based on faith and the doctor’s opinions and very little knowledge and experience.

Every single day was a complete mystery, many of you formed very close relationships with our doctors and relied on them as your one and only support system.

Due to the doctors and parents fighting so hard for us, they often became a very close part of our lives. The doctor I grew up with since I was born until 21 years old, gave my mom and dad his personal home phone number to call at any time. My mother said his wife was so kind and understanding of her frantic calls at 3am asking “should I take her to the hospital? She’s is throwing up constantly, not eating, non-stop crying and nothing will soother her, will this hurt her heart? What should I do?” She said he always answered and if need be, he’d meet her at the hospital. Then as a single mother, she would have to wake up my brother two years older than me, pack us in the car, and spend yet another night and morning in the hospital. This was my mom’s life for the first 10 years of my life, but it was the worst with constant ER visits during the first 5 years. (more in Quieting the Clock...)

Many of our parents lost their jobs or were forced to quit to stay at home with us. This left them without insurance, money, and resources to take care of us. Therefore, solely relying on our fathers. My father thankfully had excellent health insurance for me, however they struggled financially. My mother got creative and opened her own in home daycare! She put an ad in the paper, got a few replies, and it grew from there. It was so much fun for my brother and I too! My mom was able to be at home with both of us while also making money and helping other parents have a safe, fun place for their children to come and spend the day. She would make fun snacks, take us to fun things like the pool and zoo, depending on how many kids she had that day, and I still remember to this day how much fun we had!

My parents also struggled with the pain of having to constantly leave my brother, take him to a family members house, and be in the hospital with me again. This disrupts our siblings lives as much as it does our parents lives. Depending on the age of our sibling, in my opinion is how much it affects them during our sickest years. Our worst years are usually the first five years of our life. (more in "Siblings of CHD" chapter in Quieting the Clock...)

Once we live past five and our bodies and brains begin to form after five years of trauma to our bodies, we were able to slowly begin our little lives. However, due to the lack of information and still no statistics again, most of our doctors were still saying we may not make it past ten years old now that we are five, then when we were ten it was 15, then when we were 15 it was 20, 25, and the big number was always 30.

Now here we are, in our late twenties, thirties, and forties. Some of us have had one or two more heart surgeries, and other procedures related to keeping a close eye on the status of our hearts.

We now know that the original Fontan we had has saved hundreds of babies lives from our generation and found out once social media came out that people with various forms of CHD with the Fontan have various complications later in life, yet we are all figuring this out together. How to manage adult life as a Fontan patient.

However, our parents are the original soldiers who poured their blood, sweat, and tears into raising us on nothing but faith, intuition, and the minimal knowledge doctors had. And they did this completely ALONE. I want to say THANK YOU.

Even though those two words do not feel anything close to enough for what you all have been through, the relentless amount of hard work and pain you have gone through raising a child constantly in and out of the hospital, growing up afraid, alone, feeling like an alien because no one else was like us, and somehow just always knowing what to do and what to say, or just by being there and never leaving us, just to get us all through each day.

You are all the original SOLDIERS of CHD. You are the ones who created us, the pioneers for CHD, yet we wouldn’t be who we are today without your relentless determination to fight for us every single minute of every single day.

Fighting doctors & nurses - who had no idea about CHD and you had to teach them, telling nurses or doctors “NO you do not do THIS, you do THAT,” or NO she is not taking that medication, she doesn’t need it, or YES we have done everything you said and still no change in her health, etc..”

Fighting teachers– explain to them “she is on Lasix, etc and needs to be able to get up and use the restroom whenever she wants, get out of gym class, can’t go to that field trip or if she does she needs someone to be watching her constantly, if she says she is sick LISTEN to her, she is not lying or making it up to get out of class, let her leave the classroom, etc..”

Explaining to friend’s parents - when I wanted to spend the night somewhere or go on a vacation with a friend the severity of my health and to keep a close watch on me and to call her at any time of the day, even if it’s 3am if she is saying or acting like she is sick or doesn’t feel good.

Explaining to family & friends – Surgeries, when to visit, status of our health, no there’s nothing you can do to help me except give me food and prayers and a shoulder to cry on.

Taking care of our Siblings & Fathers, or Father taking care of mother – Especially as a single mother like my mom was, she would make 15 page lists (LOL) every time I’d go to my Dad’s house for even two days of everything I could and couldn’t do and what not to do, if we were grounded and for what, lists of every phone number in the state of Ohio – all of my doctors, hospitals, 10 family members, poison control, etc. (lol!)

Supporting us through surgeries, procedures & hospital stays - Hearing the constant beeping for hours upon hours, sitting and sleeping in the uncomfortable chairs, eating fast food or hospital food for days or weeks, maintaining taking care of a family and yourself as best as you can outside of the hospital. Going into work everyday holding back the tears so people don't ask questions, or bursting into tears when they do. Holding our hands, talking to us and signing us songs even though we can't respond, feeding us, brushing our hair, changing our socks and underwear and hospital gown, brushing our teeth, helping us use the bathroom, walking with us around the hallways to get us exercise, pushing us in wheelchairs while also pushing our IV stands, not being able to relate to your friends with healthy children, wanting to punch people in the face sometimes when they complain about their child having a temporary minor sickness, keeping everyone updated, keeping track of every single thing doctors and nurses say and do. The list goes on..

Going through all of this as a family changes the dynamic of each relationship. I can honestly say one of the hardest times in my life was making the decision to get my tubes tied and signing my rights away to ever bare a child. I hadn’t seen my parents break down like that in a long time, my Grandpa cried too. It was a time I will never forget because both of my parents and my Grandpa Gordon were so broken for me yet so strong for me. It was a very painful grieving process for all of us and I will be forever grateful that they were all there for me in their own ways for one of the hardest decisions of my adult life. It’s decisions like this that really bring out the reality of your friends and family as I had a few family members who didn’t speak to me for an entire year after this because of their own religious beliefs. They thought I was going against God and the purpose of being a woman, which to them was to birth children. That was a painful process for us as well because it was very hurtful to all of us. I did not get a choice if I could have children, God chose that for me and instead I get to nurture and love thousands of people every single day. I am okay with that now. It took awhile, but I’m happy with my decision.

Overall, my mom is ruthless and she has taught me the epitome of fighting for myself and how to be an independent woman. No she didn’t know how to live with CHD or raise a child with CHD, but that woman raised me to teach myself, listen to my body, listen to doctors if I feel it’s right and if not then go my own way (which is why I’m still alive today), be STRONG, be a FIGHTER, help others who are suffering or in pain, “teach others your story and maybe it will save a life or take some stress off CHD parents today because I would’ve given ANYTHING to have known an older person with CHD when you were little.” The list goes on for what my mother, and our mothers have taught us. And the funny thing is, she never SAID any of this stuff, she just DID it all. That is where I learned to be a doer, not a talker, (even though I talk constantly, even talking my mom to sleep throughout my life lol), but what I mean is I learned from her that you don’t just SAY things, you DO them.

I thought I was in the clear and free when I went off to college. Only to be woken up by three police officers at my door at 11am (way too early for a college student), saying:

“are you Stephanie Romer?”

“Yes….?? Who died..?”

“Does your phone work?”

“Yeahhhh whyyy?”

“Call your mother. She sent us here to check on you and said you have a serious heart condition, we can have an ambulance here in 10 seconds, do you need to go to the hospital?”

“No. I’m fine. I just have been sleeping for two days because I’m tired and have no idea where my phone is.”

“Okay well respect your mother, she is ready to send the swat team to bust down your door. She explained your health to us and you need to tell her if you’ll be sleeping for two days. We told her we will check on you anytime for her.”

“Okay… bye.”

That was the moment I realized no matter where I was, my mom was still with me. Even though at the time I was mad at her because it was embarrassing, I also felt bad for ignoring her.

We didn’t have social media like Facebook, or texting, back then so she relied solely on my phone calls to see if I was alive every day.

Please have respect for our parents even if it’s annoying. They have been through hell with us, and are programmed to believe we can drop dead at any moment, because honestly sudden death is a real thing with CHD adults more times we may want to face. But I don’t think it happens unless there are signs of severe decline in health. (Maybe that’s something we can talk about?) Either way the point is, our parents are terrified for our lives and yes we have our own problems living with this and yes we are scared too, but at least we KNOW how we feel, we KNOW we are alive and sleeping, etc and they don’t.

They took it upon themselves to NEVER GIVE UP ON US even if they didn’t raise us how we think they should have, we are all flawed human beings experiencing this life together for the first time.

Yes it’s painful to be us, but can you imagine the agony of watching it from the outside? Never knowing anything we don’t tell them? We should be lucky we don’t have drones outside of our houses as adults, LOL! Or maybe we do …. ;P

No matter how annoying our parents may be, if they don’t show us they love us in the way we feel we need to be loved, please have faith and trust that they have done and are doing THE BEST THEY CAN WITH WHAT THEY WERE GIVEN.

This has been a learning process for me. My mother and I are very alike and we have had a hard relationship in some ways and in others a very easy, fun, hilarious relationship. My father and I have a completely different type of relationship than my mother and I and I am finally accepting that that’s okay. I am learning to appreciate their differences in the way they have raised me, the way they talk to me, help me, and support me. They are very different styles of parenting, yet it is still parenting and I am beyond thankful to be able to sit here today alive and typing this with two beautiful amazing parents in my life who I can proudly say never gave up on me, even though I didn’t always see it that way. The older I get the more I realize, WOW I feel like a total asshole for not appreciating my parents more until now. It took suddenly losing my stepfather of 20 years to wake me up and say “get it together Stephanie, these people are your PARENTS and they won’t be here forever!”

We all have such unique relationships with our parents. Many of our fathers left, checked out, or stayed out of the picture and understand that that was the way they coped. It isn’t right, but please rise above it as an adult and spend as much time as you can with the man. (Or woman if it was your mother who check out). Usually one of our parents from my understanding after years of interviewing CHD adults.

Many of us also have tough relationships with our siblings, or very close. Either way, nurture that relationship as much as you possibly can, even if they too are completely checked out. That is how they deal with the pain and fears of losing us. Yes, we have pain and fear too beyond belief, but that’s not what this blog is about.

If you have made it this far and are still reading this, I appreciate your time learning about our relentless parents who paved the way for CHD Parents today.

For the latest resource for CHD Parents & Physicians please make sure to grab your copy of QUIETING THE CLOCK today!

Memoir of a Girl Facing Death and Chasing Freedom

Mom, Thank you for your endless love, dedication, support, and being my biggest fan. You deserve the happiest most stress-free life. Thank you Alan for making my mom so happy and taking such good care of her, being so supportive and understanding of my journey, and jumping into our crazy life with grace. It is her turn to be taken care of for once. My mother has been through more than any human should survive and it brings so much peace and joy to my heart knowing she is in the best hands. I know God chose you for her, I just wish he didn’t take so long! Lol. But hey, better late than never!

Mom, I love you & appreciate you more than word can say. Thank you for making me, lol. Thank you for showing me how to be a relentlessly strong woman, leader, organizer, facilitator, and DOER. Also thank you for teaching me how to love and respect myself and be strong in my faith. Thank you for always supporting me through all of my phases, inventions, hospital stays, 16 years of CHD Advocacy work, becoming a Trauma & Health Coach, and now AUTHOR of my first book Quieting the Clock! And somehow you have done all of this while always looking so beautiful!

THANK YOU FIRST & SECOND GENERATION CHD PARENTS, YOU ARE HEROES, WARRIORS, AND SOLDIERS who created children who are creating CHD History and building a Legacy to leave to the world.

*Below are some personal messages or quotes from a few CHD Adults to our parents:

“You have laid me in my surgeon's arms, you have slept upright in a hospital chair, you've listened to the beeping of machines & been thankful, you smiled through the tears, you have found strength when there wasn't any left. A parents love is the fuel that enables a normal human being to do the impossible.” -Samantha Davis

“I am proud to call this strong, uplifting, smart, funny, caring woman my mom. She is my rock and I do not know where I could be with our her.” – Matt Gunther

"Behind every child who believes in themselves, is a parent who believed first" -Anonymous

“Mom, thank you for always believing in me.” – Brittany Foster

“Because of you I am what I am today. Thank you for loving me and never leaving my side. I love you Mom.” -Bailey Schafer

Rest in Peace & Fly High Andrew. I will always love you and cherish our times together. You are deeply missed and were blessed with such an amazing, beautiful, strong Mother who helped get CHD Adults the rights we have now by relentlessly working with ACHA and fighting Congress to get us the rights and recognition we deserve. Thank you for fighting for us Martha & Andrew. <3

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“I alone cannot change the world, but I can cast a stone across the waters to create many ripples." Mother Teresa

Copyright © 2022 | CHD Legacy Publishing | Author: Stephanie Romer