"All of us have scars. Some have scars that are visible to others,and some have scars that can't be seen, but can only be felt inside. Derrick has touched my heart and given me a scar that will never fade. Scars are not bad. They make us who we are. They give us personality, and they help us tell our stories. It's what we do with ours scars that really matters."
~Shannon, Heart Mom to Derrick (TGA, Single Ventricle, small pulm artery, Dextrocardia, & Mitral Atresia)
*Heart Mom to Bayden (ToF, ASD, & Subaortic membrane) shares some of her feelings:
"Bayden was born March 14, 2009 with the Congenital Heart Defects: Tetralogy of Fallot, Atrial Septal Defect, and Subaortic Membrane. He had his full repair when he was 4 ½ months old. We call Bayden’s scar his zipper. It’s the doorway to his mended heart. His scar is something I hold very dear to my heart. His “zipper” has a good story behind it. I love telling people about his Congenital Heart Defect when they ask “Why does your son have a scar?”. Bayden knows where his scar is and what’s behind it. When you ask him where his heart is, he points to his scar. I love my son’s scar. I hope when he gets older he will love it too. I really hope he is not ashamed of it or is insecure about showing it off. His scar defines him. He is my survivor and he has the scar to prove it!"
"I can remember since the first time I saw Riley's chest, all I think about was her future. Is she going to be made fun of? Will she still be as confident as others? Will she develope normally, as in becoming a woman? I have so many hopes and dreams that she will be "normal" and she will accept and embrace her scar because she will be different and that is a reality.
*Heart Mom Kathy to Ethan (Tricuspid Atresia, Pulmonary Stenosis, HRHS) shares about her son’s scars:
*Heart Mom, Dana, mother of 2 CHDers shares her feelings on scars:
"My 13 year old daughter occasionally exhibits some concern about her scar, but most of the time she's very comfortable with it. She is quite happy wearing tank tops and 2 piece swim-suits, and shows little concern for whether her scar "is showing". Her last surgery left her with a bit of an "angle" to the top portion, so it no longer looks like a perfectly straight scar down the center of her chest. The last surgery (her 3rd) also left it with more pink and red areas to the scar, and more lumpiness to the scar. This comes due to the fact that they had to cut through old scar tissue and along the edge of old scar tissue, so the new scar tissues are forming next to and around that old scar, creating more of a lumpy effect.
Oh how I love the innocence of children. I too had that innocence, but as we get older, we can go different ways on our feelings of our scars. Here are the feelings of some other Adult CHDers.
*I'll start with myself, Lauren (Tricuspid Atresia, HRHS):
"I noticed my scars at a young age, I don't remember when, but I never thought too much of them. I remember asking my parents what happened and they told me something similar to this "Doctors had to make my special heart better and those those are your badges of honor." As I got older I loved my scars and was never afraid to show them off. As I got to school age I never came right out and told people about my heart or my scars, but if someone noticed them I was more then happy to tell them "I have a heart condition and needed open heart surgery."
But what about stares and remarks? My parents told me they got some stares when I was little and they would ingnore then or just tell people. They never gave off they vibe that they were upset about stares, but maybe they just aren't telling me how they felt or just don't want to talk about it. I do know they were VERY proud of my scars and weren't afraid to show it. My scars held alot of meaning to my parents and still do and I know that they hoped that I would grow up to appreciate and love my scars just as much as they did. For the most part I did. I love them! I do know during my teenage years I was a bit self concious of them and didn't share with many about my heart condition and always hoped no one would noticed my scar. As far as I can remember I didn't have many people my age in junior high or high school asking me about my scars. I don't even think most saw them as in school, I went to a private school and had a uniform, my shirts covered up my scars. The times I did wear shirts that showed my scars, I didn't have anyone really looking or noticing them. Yes I got a few people and I would just say I had open heart surgery when I was little and that was it. When it came to wearing a bathing suit, I was even more self concious. I felt that when I was walking that people were staring, but most of the time they weren't. I did get stares and yes I didn't like them, but I ingnored them the best I could. A few times I said "you have a problem?" and they would turn away or I would start staring at them and they would stop staring haha. To those who were nice and just asked, I told them and I would get shocked looks, sympathy, wow's, "Your fine now, right?", etc.
Now, at almost 23 years old, I'm not as shy as I was as a teenager. I have no problem wearing tops that show my scar. I don't have a problem with telling people if they ask. I do have a problem with staring still, I think it's rude, I wish if people notice my scar they just say something if they are curious and not stare or whisper that makes it obvious that they are staring or talking about me. I do ingore it and I don't get that upset because they are strangers, I don't know them and they just don't understand. When I do tell people about what my scar stands for, I get the same different reactions: sympathy, wow's, shocked looks, questions, and some even are interested in learning more.
I'm super proud of my scars just as I was growing up. I've always thought of them as badges of honor. They tell a story of how far I've come and that I'm ALIVE! I would never want to get rid of my scars, they are a part of what makes me, me. I love them. There are times like when I was growing up that I forget I have them and I feel so "normal", but there are other times were I take a good look at them and I run my fingers down my scars and I smile, but it's also a sure real feeling that I can't describe.
Though I'm not afraid of showing my scars I know not everyone is like that and that's OK! Everything copes with them differently. It doesn't matter how one choices to share their scars and along as inside of themselves they are proud of them & understand that they are special. It can be super hard for some to accept that especially teenagers and that's ok. In their own time and with positive support they will hopefully accept them in their own personal way. Even if they don't love them and just accept them, that is just fine.
So, my advice or tips for CHD parents is: let your children know that their scars are special badges of honor. Support them in everyway you can. Teach them to ignore stares and tell them that those people don't understand how special they are. Tell them it's ok to show off their scars and share their story. If they don't want to show their scars, let them know that's ok, but also let them know they shouldn't be ashamed of them either. It may take time for them to figure out how they want to deal with their scars, but let them know that whatever they want to do is ok. Telling them thier heroic story and why they have those scars can help. I know some kids just want to fit in, I know I did, but tell them it's good to be different, but if everyone was the same that would be pretty boring. Their scars means that they are ALIVE and LIVING to the FULLEST! "
*Here is what Francine, a 36yr old CHDer (Complex CHD, Heart Transplant)has to say about scars:
"As for me, being a 36 year old with CHDs, I took the "yeah, I've got scars! You got a problem with that" mentality. Of course, not "being any bigger than a butt hair" as my friend so lovingly says about me, I didn't really have all that mu...ch swagger to go behind the words. Picture this pint sized, underdeveloped shortest-one-in-her-class kid coming out fists swing, ready to challenge anyone who wanted to question her scars.
I'm still that way. I survived for a reason, and if swinging my fists to get out the CHD message is why I survived, then that's what I'll do. Sometimes, the mightiest of us all is the smallest voice!
I do remember a few people more looking at the fact that I was blue than the fact that I had scars (of course, I never had the tell-tale down the front zipper scar, since I never had open-heart surgery). My main scar that was visible was the one for my BT shunt, and people could never understand how a scar on my left shoulder could be from a surgery to help my heart.
In Grade 11, I actually did an oral report about how to react when seeing a disabled person. I included someone who's lips were blue in my speech, though I don't believe I was "blue" at that time. I think I was between surgeries at that time, and fairly stable, but I wanted to put up the good fight for the little guys (like all you parents' children) who are living the CHD reality like I am, but are so much younger. It was my way of being "in your corner", I guess, and I still do that today."
"I have quite a lot of scars. I have my big one in the front and a half of one under my right breast. That particular breast didn't develope fully either. Then I have two scars on my back. One all the way across and of course all the way down. One was for my bypass and the other one for my scolois. As a kid I never wore a bikini until I got a little older. Although that didn't last to long. lol. The only one comment that I can say that I remember that was rude was. A girl I was working with told me that I shouldn't tell people about not hitting me in the chest or something like that. She was young and not very respectful at the time. I mostly just have kids who stare at me most of the time. If they ask I tell them what it's from. If there scared of me or something I just try to be a little more friendlier or I guess just let them know they won't get what I have. lol. I mostly get comments when I have to wear my heart monitor.
The funniest comment I got was from my third grade teacher who I got her twice. "Was is that thing going to record me?" lol. I think she was being funny. Although I did have one little girl in store ask me if that was a raido thing or something and of course I just said yes because she wouldn't of understood. She was just a toddler and plus I knew I'd never see her again. lol."
Parents can’t force their son or daughter to feel pride in their scars. Wearing clothes that show the scar should be based on what the child/teen/young adult feels comfortable in and not the parents desire to have their CHDer show pride in what they have gone through.
As long as the CHDer isn’t ignoring their health concerns, then who cares if they want to show off their scar.My favorite things to wear are t-shirts. Very rarely do I wear a v-neck. That has nothing to do with me not being proud of the scar and everything to do with me being a more conservative dresser.
So having a scar is definitely setting a double standard. Girls are uncool if they have one and boys are cool if they have one. That double standard is really awful but kids and teens can be very cruel to those who are different."
