I am a TOF patient not quite 49yr old. I do not remember being afraid to get back out there. What I do remember is all the questions in gym class about my scars as I changed. I had a simple answer that the doctors fixed my heart. I do think it is important for kids to be able to quickly confidently and hopefully proudly answer questions about their scars. If they are able to do that, kids usually see them as cool and if can help you feel more confident. My parents never had me wear clothes that hid my scars and they always let me explain them if someone asked when they were near. If they thought it would help me never be ashamed of them or feel like I was really different from other kids, it worked. Kids are resilient and believe things that become broken a grown up can usually fix. Try not to make them feel fragile and different. If the doctors say they can go for it, be their biggest cheerleader. I know mine were at all my swim meets.
It may help her to see others that have had surgery do a lot of cool sports and activities. Shawn White the famous snow boarder with the cool tricks had open heart. Maybe you could show her a video of him. I finished my first sprint triathlon a year and a half after one of my open heart surgeries.
Robin Davis
Merck Women's Healthcare
216-905-1514.
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------Original Message------
Those of you that have had children that had open heart surgery, if they were cleared to return to sports, did your child have a hard time adjusting to that new freedom again?
Our daughter is afraid. She is feeling new things with her heart she never felt before because it wasn't ever functioning properly. She has come to me a few times since finding out that she's scared. She's scared to ride the bus. She's scared to play in the playground. She's scared to participate in gym class again.
We told her it takes baby steps. The teacher asked me if I wanted her ot talk to the school counselor. I told her I didn't think that would do any good. One the counselor doesn't have any experience with this sort of situation and two, if the cardiologists her dad, grandparents and I speaking to her can't reassure her speaking with the guidance counselor isn't going to help. It might make things worse based on my daughter's personality.
I was curious if any of you had a situation like this and if so, what you did to help them get past it.
I am signing her up for a class at the Y to take with her big sister. I double checked and they are going to make an exception and allow them to take the class together. (She would take the class before big sister, however we'd be at the Y all evening and big sister takes the class by herself, no one else has signed up the last 2 sessions so it would be fun for big sister we thought. Both of them together might be helpful. My husband will stay like he does each week for reassurance.
All we can do is reassure her and support her.
To be honest though, I'm just as scared as she is to some degree. I haven't said anything in front of her or ever acted concerned. I just don't know how to not worry that Surgery was a success and she will be fine since she has to have a yearly scan and testing. There are not many out there that had this repair to know how they did after especially since they only started keeping data the last 7 years....
Thanks in advance for those that have gone through something similar that are willing to open up on what worked for their child and them
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Teddy
Mom to 4, one of which has a repaired right coronary artery w/intramural course.
Central, PA
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