Keeping the Innocence

最終更新: 2019年10月24日


How much information do you disclose to a child

about their own Surgeries & Hospital Stays?

Stephanie Romer. Heart Failure 1989.

Above: Playing while in heart failure right before my Fontan in 1989


Above: One of my CHD sisters, Nicole and I, are at our shared doctors office, waiting for our appointments, being silly and keeping the innocence alive that we often missed out on as a kid. ..because lets be honest .. shit was just way too serious back then.

I was asked a very important question by a CHD parent today and I decided to not only answer it, but to put my answer in a blog to share with all parents after I asked her if that was okay.

Also, because once I began answering it, it turned into about 5 pages lol.

The Question was from a CHD mother of a nine-year-old CHDer who needs surgery:

Below is her post:

“How would you have your parents explain to you (at 9 yrs old) that there is a surgery (which you know about but you don’t want to do it and say you "feel fine") and it could make a lot of things better for the future but it is quite risky. I know she doesn't want to do it because she's scared. How do I get her to think rationally about it. Most times when I ask her she attempts to change the subject.”

In response, I would like to begin by saying to the CHD and other special needs parents and caregivers – I have an immense amount of respect, honor, and gratitude for you. First, I’d like to begin by thanking you all for never giving up on us.

Our parents are our soldiers. Their strength comes before ours. We are warriors with what I call Warrior Blood, but without our relentless parents helping us through, we simply would not make it. CHD and other special needs parents are simply THE strongest unsung heroes I have ever known.

A little about me - I am a very passionate and strong advocate for CHD adults, teens, children, and parents who has studied human behavior and child psychology for the past 12 years. I have helped raise more children than I can count, being on the inside of multiple homes as a nanny, house-manager, personal assistant, and caregiver for families of special needs children and adults, as well as some children without special needs. In a nutshell, I have extensive knowledge and experience in the subject of child development and human behavior, and am confident in the advice I give. I hope anyone reading this can pull at least one thing from it!

I am so happy I was asked this very important question about how to handle talking to a 9-year-old about surgery.

There are a couple of points I would like to cover.

First, I would like to thank this amazing mother and friend for asking this question openly and allowing me to share her post and answer her question in a blog.

The fact that she "feels fine" I would tell her that the doctors are smart and know what to look for in all of the tests and have found we need a surgery and that's ok! My suggestion is to keep it positive and light - as you will hear a lot throughout my blog. I suggest to keep it short, simple and make sure she knows the doctors study special hearts constantly and care about helping us have better hearts so we can have more fun! Hehe. :D

Secondly, In regards to her wanting her daughter to think rationally about the surgery - my response would be that since she is still a child and cannot comprehend what we as adults can comprehend, you may think understanding it rationally would take some pain away, but if she isn't able to or interested in understanding it any further I would leave it at that and keep it light. As much as our parents want to help us, the hardest part that I suggest a CHD parent to learn is to let go and let God - or any higher power you believe in. We will not break, we will be okay. I promise.

Honestly, as a nine-year-old, things don't matter as much as they do in an adult brain with adult feelings. I believe she is shutting down because it is beyond her compression. I am 31 years old and this life is beyond my comprehension and I will not talk to ANYONE except my therapist about surgeries I may need or the fragility of my health.

I cannot stress enough that during this time she will have a lot of questions and feelings and just answer them the best you can when they come up. I personally do not suggest to bring up the subject if she doesn’t, however it is obviously completely up to each parent how they approach each doctors visit, surgery and hospital stay.

Life is just way too serious as a CHD kid and we need to just be kids with less information - in my opinion. There's always something to stress out about, worry about, a date or test to be afraid of, a needle to cry about, a new depressing pamphlet that your mom has her face buried in trying to hide her tears, a whispered conversation your parents and doctor try to hide, awkward stares, bullies and mean words from kids at school you try to pretend don't exist, waiting rooms full of old people and you're the only kid with no one to talk to or play with, and a NEVER ENDING supply of doctors who DON'T UNDERSTAND YOU that your parents have to yell at constantly because they don't believe what is wrong with you is REAL, and more ... The list goes on ... Excuse my language, but shit is just WAY TOO SERIOUS as a CHD kid and it's EXHAUSTING.

Please keep in mind that while you are stressing about complications and death, she is probably thinking about playing dolls or her favorite toys, watching her favorite shows, talking to her friends, her favorite teachers and projects and other normal kid things. My advice is to not shake that anymore than CHD already does for us naturally, which is out of everyones control. I suggest to wait for her to talk to you while also telling her you are there to talk when she wants to. She will when she is ready if she feels comfortable opening up to you.


Photos from above before my Fontan. This was the party my mom had for me for everyone to see me .. possibly for one last time, before I went in for this experimental new procedure. I was in heart failure and clearly very very sick. Yet all I wanted to do was still go down the slides like my cousins. So I did. I had no idea what was about to happen and I didn't care. I just wanted to play.

*Also, I cut my own hair right before my surgery too, don't worry my mom didn't cut my bangs like that! LOL Also I have no idea what's all over that picture - I think KoolAid from the 90's. lol.

What determines if we will open up to you? If you have a meltdown every time we talk to you or not. If you cry every time we talk to you, we’re not going to tell you anything. If you get upset, mad, cry or anything other than listen and be positive, we won’t want to share things with you because we already have too much going on and can’t take seeing people we love hurt because of US. That is the worst pain of all.

I’m not saying you can’t cry or be upset in front of your CHD child, I’m saying to please not make it a conditioned response. If at least 6 or 7/10 times you are talking about your child’s health with your child and you are cool and positive, they will come to you for the rest of their lives and tell you EVERYTHING. If 7/10 times you are talking to your child about their health and crying, becoming angry, or any other negative emotion – they will hold it all inside because we don’t want to bother you and put even MORE stress on you than we already know we do simply by existing.

However, the tricky part is even if you are comfortable and safe to open up to, many sick children and teens will still hold everything inside for the same reason as above. We already feel like a burden. The older we get the more we realize how much money you spend, how much work you miss, how many fights we cause, how left out our siblings are, and any other problem in the home you better believe we will be hyper-aware of it and want to just hide and be invisible so that we won't hurt anyone anymore or cause anymore problems. This is why it's SO important to keep your adult lives extremely private because we will carry ALL of your pain and ALL of your weight inside of us .. until we are tired adults and go to therapy to learn how to release it all.

The main things I stress the most to parents when I speak to them are two things:

1st) You are speaking and thinking from an ADULT mind.

Adjust that. My suggestion is for every stage your child is at, do some research on the stage of development of their brains and bodies at that phase of their lives and adjust how you communicate with them based off what you learn and make it your own relationship. Just please educate yourself first.

2nd) Let your child show you who they are on their own time.

I cannot stress this enough. I asked all the parents in my last speech to write this one down because it is VITAL to your relationship with your CHD child. Let them show you how much they can do and that goes for emotional, mental, and physical health. Obviously don’t let them call the shots – be strong and be the parent! Just allow them to show you their limits. And if they have a limit by not wanting to talk about their health for a few months or years, then let them be and they will come to you when they are ready. Check in with them periodically but don’t annoy them. How do you annoy them? By innocently, lovingly, and accidentally placing your fears FOR them, ON them. You have absolutely no intent to do this and I understand that, but that is the feeling we get sometimes when our parents are so afraid for our lives. All it does is make us 100 times more afraid for our own lives and you will then begin to see behavioral changes.

Also, more important information I share with parents is that your child is a mirror of you and you are their strongest leaders. If you are stressed out, they will be stressed out, if you are happy and positive, they will be happy and positive, if you are chill about it, they will be more chill about it. Children mirror their parents and that's simple human behavior. However, getting past the pain inside of yourself and hiding how terrified, scared, sad, and angry you are feeling, I PROMISE you will create a better emotional and mental outcome for any child getting surgery and going through any traumatic experience, which for some can even be a blood test. I personally loved going to see all of my nurses, phlebotomists, and doctors. They felt like my family and as a child I didn’t understand that they weren’t. I even missed them at family events and wondered why they weren’t there -lol- but that’s a side note.

Moving forward, I understand this could possibly feel fake or you may feel like you're lying to your child by pretending to be happy about a sad situation, however children are children and they do not have a fully developed brain to make decisions for themselves and therefore will association pain and happiness with what their parents and environment associate with pain and happiness.

This is where educating yourself on the development of their brains and bodies at whatever age your child is at is crucial to understanding them. Also reaching out, like this mother has and asking other CHDers or just anyone their opinions, is greatly helpful. Even if we don’t like someone’s opinion, it can still direct us to finding the opinion that is most helpful by the process of elimination.

Just as you followed all of the milestones when your babies were in utero, infants and then toddlers, please continue educating yourself as they grow and again I promise you your relationship will be very different than if you didn’t understand them at all. Now we as CHDers have a lot of different and quirky things about us and our brain and body development is often a little slower, but that is strictly on an individual basis.

Overall, to talk to an adolescent child about surgery or other serious medical issues, I think it would be best for the emotional and mental long term health to keep it simple and positive. I suggest to not lie about everything, but lie about the dangerous and terrifying parts like death and complications.

When she is older feel free to talk to them about harder things, however personally I think she is way too young to talk about too many of the scary possibilities, no matter how smart she is she is still a child.

I see it like this -- why tell a child they might die or MIGHT have a serious complication when that will cause double the amount of anxiety and depression and therefore weaken the immune system when you can positively uplift them and keep their mind and body as healthy as possible going into surgery.

With that said, lets do a worst-case scenario - If a child dies during surgery, it won't matter if you tell them the complications or possibilities or not, right? I see it as why not keep it positive and focus on happiness, jokes, being silly, creating fun memories in the hospital and making it a positive experience to lessen the PTSD and future emotional and mental traumas we have that comes with growing up with a disease no one knows anything about with little to no statistics. (Depending on your diagnosis and age).

Trust me, we have enough to worry about and enough to make us go crazy and when our parents stay positive and happy - no matter how fake it is, it pulls us through.

I will always respect my mom and dad so much for not showing any pain they were going through because I was already going through more than my little mind and body could comprehend. I could NOT have handled seeing my parents fall apart as a child and tell me negative scary things about ANYTHING I was about to go through. I have enough emotional problems and omgosh that would have put me over the edge. What I heard from the doctors and listening to the way family, teachers and peers talked about me was more than enough to deal with on top of living a “normal” kids life as well – school, peers, tests, homework, developing hormones, etc.. I didn’t need my own parents contributing to my depression. Especially as an adolescent – that’s when peer issues are very very very hard to deal with and you need as less stress at home as possible.

When you show pain in front of a child they by default become overly worried and stressed about how to make their parents happy and that is not a stress we need. We need to just be a kid, color and play and watch movies and eat Popsicles in the hospital bed, get surgery, come out to smiling faces and our favorite stuffed animals, toys, music, movies, people, and things and that's it. They will process everything on their own time and my advice is to have a therapist for them to process these things without worrying about hurting our parents or someone we love. Most of us, if not all of us, already feel like we cause too much pain, we are burdens in everyone’s lives, and are problems in our parents’ life as it is and we sometimes internalize any problem they have as it being our fault on some level. This is one reason I recommend a therapist. If not at this age, during the teen years.

I can tell you from personal experience I am thankful every single day for my mother and father lying to me about stuff I wouldn’t have cared about or understood anyway and hiding information from me. I was a child. I couldn’t handle all of that information. I was fine with going to the doctor if I knew I’d get something out of it like ice cream or popsicles or a whole day of missed school or a roll of stickers. That’s literally all I cared about. I took ANY ounce of innocence I could keep in these places that suck the soul out of you - aka - hospitals and doctors appointments. All of the pain from the needles, the awkwardness of air going up your nose and drying out your whole face, all of the scary equipment, all of the beeps and scary hospital gowns, the scary doctor tools, doctors talking to you like they’re telling you your dog just died (which is extremely annoying!), all of the depressing things about hospital life and people crying around you – it’s TOO MUCH and so we just ignore it as children and all we want is ice cream! Lol.

So let us ignore it. This is how we survive.

This is how the brain survives is it develops healthy (or unhealthy) Coping Mechanisms. Please be aware of your child's coping mechanisms because we, as chronically ill children, ALL have them to cope with our level of traumas. We are now finally learning how many neurological effects CHD creates as well and one of them is that many of us, including myself (which has been ofically diagnosed as of 30 yrs old), is that we are WAYYY OVER STIMULATED and have sensory processing issues. This makes many sounds, touches, tastes very very extreme to us. For example for me - I cannot stand when people talk loud or yell -it LITERALLY shakes my whole body from the inside out and I freeze in shock. I just cannot handle it. It's been too many years of a life of TOO MUCH.

Too much pain, too much information, too much abuse to the mind and body, too much life to keep up with when all children are supposed to do is eat, sleep, play, go to school and that's it. We have that life PLUS a life of ten 75 year old men. This does in many cases, mine being one of them, cause brain damage that can be reversed with therapy and positive, calm environments and with the resources now, can be caught and reversed with the proper help. But if you go 30+ years without any of those resources and you just live a life of being re-traumatized constantly, life is very hard to say the least and that is where my generation of CHD survivors is at right now is trying to use the resources we have now, to reverse or improve all of the damage that has been done. (That's another blog though)

The positive of us losing a lot of our innocence is we all grow up to be relentlessly strong, don't give up on things, quiet and reserved with our personal lives and careful who we trust. We are also hilarious with quirky, creative personalities who grow up to be silly, fun and light hearted big kids who do things like sit at the kids table and blow bubbles in their adult CHD appointments because we will forever go to a Pediatric office! Wooohooo!!! :D

CHD PARENTS,

I just want to hug all of you and tell you EVERYTHING WILL BE OKAY. I want to help you not have so many worries and pains as a CHD parent somehow because I am beyond confident that your children are going to grow up strong, smart, uniquely amazing individuals like us who can learn from us and each other for the first time in history and actually have some role models and CHD PEERS!!!! This makes me so happy every single time I think about it. We never had any of that and having role models with CHD and Peers with CHD will make a HUGE difference in your child's development!!

Surgeries and Hospital stays are scary but they are also just our life. That's all we know. You are watching us go through it and we are living it. It's two completely different lives.

Do you want to know what I remember about being sick all of the time, being in hospitals and coming out of surgeries?

I remember my mother’s endless love. I remember her running around doing everything, taking care of everything and everyone. Talking to doctors, sneaking me my favorite foods, getting me drinks, answering my hospital phone, talking to visitors, making appointments for my follow ups, arguing with the stupid doctors and thanking the smart and cool ones. She was CONSTANTLY fighting for me and I always wanted her to just sit down and have some of my morphine drip. HAHAA jk!

I remember my mommy holding my hand. I remember seeing her beautiful magical face being the first one I see after surgery and her always being the most beautiful creature I’ve ever seen. I remember all of the coloring books, snacks, favorite markers and colored pencils, favorite TV shows, endless freaking popsicles, and stickers at the hospitals, hahaha I was addicted! I remember my Dad holding me, I remember their smiles. I remember my Grandpas jokes. I remember him hiding his tears through his smile and lifting his glasses to wipe them away with his handkerchief. I remember my big brother making silly faces at me and holding my hand. I remember my Dad being nervous and sad and wanting to hug him but I couldn’t move. I remember him kissing me on the forehead and telling me how much he loves me. I remember my amazing comfortable bed and thinking how much it would suck to be sleeping in the bed my parents were sleeping in next to me because it’s ridiculous how uncomfortable that thing looks. I remember how AMAZING hospital food is if you are at children’s! Adult hospitals? Yeah .. that crap isn’t real food. I remember nurses coming in every 5 minutes and a line of doctors out the door waiting to meet me and shake my hand because they can’t believe I’m alive. I remember the pastors praying over me. I remember the ducks outside. I remember the sunshine. I remember all of the balloons, flowers, and cards. I remember wishing I could take my mom and dad’s pain away because I can’t even feel mine because of this AMAZING morphine drip button. WOOOHOO!!!! lol ;P

One last point I make sure to tell all parents!! ..

We don’t have many or any memories of surgeries. We are on drugs, and you are not.

We were CHILDREN, we do not interpret or remember things as you do and will from an ADULT brain.

To learn more about this, please watch or listen to FIVE adult HLHSers on our Podcast go into more detail on subjects such as not remembering surgeries and more: https://www.youtube.com/watch?v=C9vFVbhAje0

I often say it is harder to be on the outside of your sick loved one than it is to be on the inside because we are all drugged up and eating popsicles while you are developing severe trauma and PTSD watching your poor helpless baby go under this terrifying surgery.

We may have PTSD later as well, but save that for when and IF that even ever comes.

I am not at ALL downplaying the emotional and mental repercussions that later may or may not come down the road as a CHDer. That’s what my book is about.

I am strictly referring to advice for children and teens, so if you are reading this as an adult CHDer please know I am fully aware of our struggles, that is just not the subject here. Please feel free to comment to inspire hope for parents about your childhood surgeries and hospital memories and experiences and share your advice as well!

This is how we learn – this is the definition of a community coming together – all of us have different and similar stories that we can share to help different and similar families.

Please remember - Stay positive. Keep it light. Let us come to you. Yes, it’s a hard life, but it’s also positive as a child if we have positive people around us reminding us of things to be thankful for.

And if your positivity annoys your child, like my mom did, GOOD,

You’re doing your job!! ;P

Overall, it is best to keep as much innocence in us as possible because being in a harsh medical world constantly surrounded by adults and doctors and in waiting rooms with all old people - lets be honest, our innocence goes right out the door way too soon.

.. And then we get to grow up and be big kids and make up for all that we lost! Hehe!!

I thank you again to the mother who asked this very important question on so many CHD parent’s minds for being so bold and reaching out to ask questions to learn the most you can about your CHD child! We won’t learn if we don’t ask questions.

Check out my 2 Articles written to help CHD Parents & Loved ones:

Stephanie’s Story! By: Project Heart

Loving Life with 5 CHDs! By: Heartbeat Magazine (picture below)


Article for CHD Adults:


Top 10 Reasons To Date A CHD Survivor



Educate. Inspire. Heal.

Copyright © 2017 | By Stephanie Romer

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