OHS Scars - For parents of older kids

Kirsten - posted on 11/02/2012

My son, Sullivan, had his surgery at 7 days old. I read the posts on this site and am happy to read that many moms have handled the surgery by explaining to their child that their heart is special. Sullivan is happy with this explination at four years old. What happens when the gravity of the surgery and potential for death surfaces and he realizes how grave his situation was? I'm scared of what others will say that might scare him. I'm concerned that someones reaction may be so dramatic that he begins to wonder "what's wrong with me". I have time to formulate my response, but I want to be prepared ahead of time. Has anyone had this experience? How do I keep my baby from being scared? For now, he knows that his scars are trophies that show how strong he is.

Jessica - posted on 10/24/2012

My daughter had open heart surgery at two years old. She is now 8 years old. She is only sometimes embarrassed by her scar. Occasionally she will want to change her shirt if you can see her scar, but she doesn't worry about it too much. Wearing a swimsuit with her friends or around others is never a problem. Majority of the time she is fine with it, unless some bratty kid makes a rude comment, which can happen. I have told her she should be proud of her scar, it shows that she is stronger than most adults, she is a survivor! :) I think she has healed wonderfully and it is a very fine scar. We used Mederma on it to kind of smooth it out, and it worked well.

The one thing that nobody talks to parents about, at least in our case, are the growing pains. She is almost 9 and this past few months or so she has been having pains in her chest. I took her to see the cardiologist, I was worried about her heart, they checked everything out and found that her heart is fine. I was told that when children get around her age the area where the surgery was done starts to grow and stretch and can cause them pain. Sometimes after she has been running around she will have pain (after breathing hard) and sometimes even when she is just sitting. She actually woke up this morning crying because it was so bad. I give her motrin and it seems to help, the pain doesn't last too long. I was told if she had pain while doing an activity, not after, that I should be worried. I just hope the pain doesn't continue for too much longer! It is hard to see her still having to deal with something we thought was "fixed" years ago.

Angie - posted on 01/23/2009

My daughter Ashlyn has had 4 open heart surgeries and pacemaker surgery. She also has scars all over her chest and stomach. They actually fade quite a bit especially if you make sure to lather them up with sunscreen when your child goes outside. Now that Ash has had so many surgeries her scars are very prominent. She is 7 and has had the scars longer than she can remember and doesn't really even notice them. We taught her that they are her trophy. If someone asks about them she just tells them she had surgery because her heart is special. I don't know how she will be later as she grows into a young woman but right now she is proud of her scars.

Holly - posted on 01/22/2009

Well, my daughter is 8, they went in for her 4 open heart and 2 open chest at the sternum and it looks about the same. My outlook has been to encourage her to be proud of it. I don't want her, especially as a girl, to look at all of the scars (surgery, chest tubes, picc lines, etc.) as something ugly or gross. We have always told her she has a special heart and she knows what the scars are from now. I think becuase we have always been very open about everything. She has one scar from a chest tube that puckers really bad, it is right below her nipple. For us, that would be the only thing that we may pay to have corrected. BUT saying that we are not going to aproach or bring it up and it won't be untill she is older. She has to want it and be concerned with it.

Hope this helps.

Caryn - posted on 01/11/2009

My son's OHS were both before he was 10 months old. His look like a faint pencil line. Honestly, you have to really look for it. We got lucky. They closed him with 'surgical super glue'. From the early on we called his scar his 'Zipper' so it had a funny connotation to it, instead of people always asking to see his scar. Honestly the worst scars are from ale his chest tubes, but even those fade and my son is only 6. Until last summer (we are in AZ) I made him wear a rash guard when we were in the pool and always TONS of sun protection on his chest anytime, and that with Mederma I think really helped it. He thinks it's cool and LOVES to show it to people. I can send you a photo if you want? heartbabyboutique@cox.net

Jennifer - posted on 01/11/2009

we haven't done surgery  (yet) but i also wonder about scarring...is there a less invasive option yet?

Tasha - posted on 01/09/2009

Hi - my daughter had 2 OHS (4 days old and age 8).  She is 11 now and has a pretty noticable scar.  I used to worry about it showing, but I'm pretty happy that she is confident.  Some shirts show the top of her scar and if anyone asks she tells them straight out that she had surgery.  We didn't really discuss it, but she told me one day that she'd rather have the scar than not be here.  I was pretty blown away! 

Stacey - posted on 01/08/2009

My son has had two open heart surgeries, one at 4 days old and one at 8 months old. He is 5 now and his scars are evident but he is not embarrassed by them. We tell him what happened to him and we show him the video and pictures we took of him while he was in the hospital. We explain that he is special and let him know that he almost died but his heart was able to be fixed, thus the scars. In fact, when people ask him what happened, he says "My heart was broken and Jesus fixed it." I tell him what happened because he will be having more surgery in the future and he was an infant with his first two and obviously doesn't remember them. I don't want him to be scared when he wakes up after surgery with drains and IV's running everywhere.

Michelle - posted on 01/06/2009

Jenny, My son Briar is now 5 and has had 4 open heart surgeries, multiple caths and a pace maker. We talk to him about his scars . We don,t go into detail about the surgeries, but he knows why they are there. He,s proud and wants to raise his shirt and show everyone. We call his pace maker his "cookie."Last March when he had his 4th surgery, they also updated his pace maker. Now he runs around telling everyone he has energy because of his new " super charged cookie"

Margaret - posted on 12/28/2008

hi i am new to this also on facebook.i think it is great that they have a page like this.my son was born 2 months early he fought all the way to come into this world and he made it.he was born with 3 holes and a valve not closed. they did surgery on his heart at 3 months old and to this day you would never know he had heart surgery he is doing great.he is now 6 and is a very happy and healthy boy.

Stephanie - posted on 12/20/2008

I'm new to this part of facebook but not new to heart surgeries. 2 of my 3 children have had heart surgery and I have also. The scar is not that big of a deal. My oldest was 1 when he had his surgery he is now 13. His scar has not made a difference to him. We don't make a big deal about it. My daughter was 4 days old and has a scar on her shoulder blade from the first surgery. The other two surgeries were the "zipper". She was 3 months and 5 months with her next two. She is now 4 and will tell you proudly that the scars are from her new heart. She doesn't care about her's either. It's all in how you make her feel about them. If your ok with it she will be too.

Jessica - posted on 12/19/2008

Hi Jenny, I am one of those children with those MANY scars like your daughters. I am 29 now and have a daughter of my own, but besides that. to answer your questions. I myself have never been embarrassed about, but then again growing up I was in and out of hospitals due to my heart condition. I have had 2 heart surgeries, two pacemakers and so many caths I cant even count anymore! But my point is growing up with having a heart condition and being in the hospitals day in and day out the scars have just grown on me. My mother never had to explain why they were there or how they got there. Knowing I had have a heart condition is enough. My scars have faded for the most part and can barely see them. My last surgery was in 99. See them as a defect no,burden no, I guess in a way as a trophy yes because if it wasnt for those scars I wouldnt be here today! It all depends on how you see her heart condition and how you show her how you feel will determain on most of it though. You shouldnt feel ashamed or grossed about them because if you feel that way she will too. I am just talking in experience. All children react different but most of their reactions are from hat they learn from their parents. If you have any other questions dont be afraid to ask me. I am learning from my own life born with a heart condition.

Dana - posted on 12/06/2008

My son had open heart surgery when he was 6 days old. I worried about the same things you are worring about. He is now almost 5 and thinks of his heart and scar as something that makes him special. It has never been an issue for us. We go to the pool and he often runs around outside with the neighborhood kids without a shirt on. When asked, he will say "that is my special heart" and all of the kids react well as he doesn't act ashamed of it. It really hasn't been an issue!

Lauren - posted on 11/24/2008

My daughter, Ashleigh, had her open heart surgery when she was a month old. Today she is seven. When Ashleigh started kindergarten she started to ask me about her scars. I have told her about her surgery and that her heart is very very special. The scar is very light now and almost not noticeable at all. The scars from her chest tubes are more noticeable because they are a raised bump. Ashleigh has never been made fun of at school about her scars, or at summer parties where she is in a bathing suit, yes a two piece, and the scars are more noticeable. I worried when Ashleigh was just starting to heal but it has never been an issue for us. She knows they are there and she knows why they are there and tey do not bother her at all.