Tuesday, July 27, 2010

Scars... Scars... Everywhere!!


"The imprints on my chest that are forever etched into my skin are a window into a reality of a war I want to win as well as peranent badges of honor from brave battles already won" ~Me (Lauren Celeskey, CHD Survivor)

Scars... a major part of having a CHD whether they are internal or external scars. I'm going to talk about those external scars, those imprints on my chest, but before I do, I gathered some thoughts & experiences of some heart moms as well Adult CHDers. Since most of my readers are CHD moms, this is for you. Your not alone on your feelings! We are in this together!


"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!"

*Heart Mom to Riley (Transposition of the Great Arteries) shares about her daughter’s scars:

"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.

We were swimming not to long ago, and Riley had this cute two piece on and I could see parents staring and whispering. Why couldn't they come to me? Ask me? This one little girl came up to me and said"Is your baby ok? She is cute, what is on her belly? What are those little marks. Do they hurt? Why are there so many?" I began to tell her Riley had surgery as a baby and they were scars from where the doctors fixed her heart. The little girl says "Wow, she is a real miracle. Can I touch them?" She rubbed her "zipper" and ran to ,I assume, her mom. The lady grabbed her daughters hand and began to point and yell. Then, they left. Why can't adults be like kids and just ask? My kid has a scar, not anything anyone can catch, she is not contagious.

Riley will rub her "zipper" and say "Whats dat!?" I just laugh and say"Your beauty mark baby!" If she didn't have it, I would not have her. Surgery was not an option, it was the only way I could have seen my kid alive. I love her scars and I wish others would ask and not shy away. It's just a scar!!!"

*Heart Mom Kathy to Ethan (Tricuspid Atresia, Pulmonary Stenosis, HRHS) shares about her son’s scars:

"My son Ethan is the chd'er, he has had 3 open heart surgeries and 1 thoracotomy. He is very proud of all his scars, he is only 5 years old and likes to call his scars his zippers. He likes to pretend he is unzipping his zipper. People do s...tare at him a lot, people are not used to seeing children with chest scars, he tells people that Dr Knott-Craig put in his "zippers' and when he needs another surgery the dr will just "unzip" him and fix his heart then "zip" him back up. His body is scared up from many many surgeries not just heart surgeries and he takes it all like a champ, this body is the only body he knows. He looks at his scars as badges of honor!!"

*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.

As parents, we have tried to NEVER to comment if scars are showing, so as not to make them self-concious, or to give them any reason to feel as if they should hide them. Those scars have made my children and my family who we are. And we always know that if they feel differently after they reach adulthood, there are scar removal and scar treatment options that can be considered - although with their conditions, they will most likely have continued procedures throughout their lives, so being "scar-free" is probably not an option for them at all. I hear people talk or write about other children's reactions to the scars and we have not had any really bad experiences there. We do get questions from both adults and children, and we just answer them openly and with whatever details they care to hear. For the most part, my daughter's scar has led her to many conversations in our travels that she would never have had without the scars as the "initiating subject". It has opened the door to many conversations, examples being an elderly man in an elevator who had recently undergone OHS and was actually surprised to see the scar on a young girl; a 20 year old young man, OHS and CHD survivor, at the resort pool in Las Vegas who otherwise would probably not have had any reason to start a conversation with a (then) 11 year old girl, they had many interesting conversations regarding what they had been through and survived and how it affected them now."


Heart Mom, Mina, shared when her then 3yr old son, Bilal 1st really noticed his scar:
After bath time, Bilal was perched, as usual, on the bathroom counter, getting ready to brush his teeth. While he was staring into the mirror he stroked his sternotomy scar with his finger. The conversation went something like this:

Bilal: "What happened here?"
Mama: "That's where the doctor fixed your special heart."
Bilal: "Nawwww! That's where I hurt myself last week!"

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 a Heart warming scar story from Laura, a 40yr CHDer (Single Left Ventricle and Transpostion of the Great Vessels):

"I am a 40 year old with CHD, after my second surgery when I was 16. I was at a water park and would not go go on the water slides because I was not allowed to go on with my shirt on. Well as I was sitting at the table watching my sister and... the other kids, go on, I noticed a little boy about age 7 not wanting to take his shirt off either. My mom was talking to his mom and I heard his mom say that he just had open heart surgery and didn't want to take his shirt off because of his scar. Well me being 16, and the mommy in me coming out, walked close to him, took my shirt off and smiled at him. He smiled up at me, took his shirt off, took me by the hand and we went sliding together for the whole day.... It was a small water park with only 4 slides in PA......."

*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."

*Adult CHDer, Jason (TGA, VSD), shares a few of his thoughts about scars:
"When I was younger with my scars, I always knew I was different. I knew that I was the only kid on the block, or in the school for that matter, that had scars or this "condition." I always remembered my mom telling me, never give up and be proud about your scars. You can do anything you want too, and I always did. I was proud to show my scars and tell people about them. I was proud to take my shirt off at a local swimming pool or at the water park. I even remember as a teenager, I would even joke about them. I would tell people I was "stabbed when I was trying to save someone." But then tell them the trough. I never let my CHD run my life, I ran my life with a CHD and didn't care what anybody thought about me. To surfing, wake boarding, snowboarding, and skateboarding, I have always been proud to show my scars."

*Here is alittle bit about scars from 35yr old Adult CHDer (Pulmonary Atresia), Tiffany:

"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."

*Finally, 24yr old Adult CHDer, Alexia (DORV, ASD, Pulmonary Stenosis) share a bit about scars:

"Most younger kids feel as though their scar is a battle scar or a zipper or simply a badge of braveness. Whereas some older children/young adults hate the scars because it sets them apart, makes them different from their friends and during the teen years it is extremely important to fit in.If you have a major scar you are not considered popular because you are not perfect. The popular kids are generally perfect looking. Teenagers strive to be popular and to them,a scar would ruin that. Many teenagers/young adults don’t like to think about it so as long as they cover up their scar they don’t have to think about it. Out of sight,out of mind.
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.

I’ve been talking mostly about girls since the only time the boys are shirtless is in the pool. Even boys who don’t have scars like to wear a “swimming shirt” these days. For the boys that enjoy showing off their scar by going shirtless,just make sure you put sunscreen on the scar. Boys seem to have an easier time with the scar. In girls having a scar means you are unpopular because you don’t have a perfect body. In boys the idea of having a scar is cool and they are admired for having one.In the teen years girls seem to like the boys with the scars.
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."

"Be PROUD! Scars are BEAUTIFUL!"

I hope you all found this educational, inspirational, helpful, & put your mind at ease even just alittle bit because in this huge CHD world, your not alone in the feelings you have about beautiful Scars!

Every scar tells a story and that story is one we should be super proud of, so who cares what others think. LIVE! LAUGH! LOVE! And show those scars proudly when you & if you feel comfortable, but never feel ashamed of your scars or your childs.

A HUGE "Thank You" to those who sent me pictures and/or paragraphs for me to share in this post. :D

Love to all!

With LOTS of Hope, Love, and Faith

blog comments powered by Disqus