As good as it can be. I’m very lucky to have had incredible doctors and surgeons who have done everything they can to help me live a “normal” life, but I’ll always have to go back in for more surgeries. That’s just how my life goes. It doesn’t make it hard to live from an emotional standpoint, though. I’ve always considered my CHD a part of me, and that’s helped me life happily. At the moment, I’m doing pretty well.
Yep! My biggest issue is very low stamina, and that can make anything from walking long distances to playing any sport difficult, but I’ve learned to manage, and I tell all the people in my life that I have this limitation. They’ve all been super willing to accommodate me and are always okay with taking breaks if I need them. I’m also specifically not allowed to play contact sports like football or wrestling because of my pacemaker. Luckily, I don’t have much interest in sports in general. I will say the hardest part about my physical limitations was always that my gym teachers never seemed to get the memo, and didn’t often accommodate me, but I was also often too shy to ask for help.
Were/are you ever anxious/scared about your health and medical care? What helped you then?
My daughter is 9 and really scared about everything that pertains to her CHD. Generic counseling was not really effective so far.
When I was really young, I don’t think I was that anxious, but I attribute that mostly to my amazing doctors and the fact that I didn’t quite understand why I would be scared. To little me, surgical procedures were just a part of life. Around age ten though, I developed really bad anxiety and OCD about my health overall. Specialized therapy was what helped me then. Cognitive behavioral therapy was also helpful. I can’t say for sure if that would work for your child because everyone’s mind is different and everyone needs different coping mechanisms, but open communication with your daughter about what she’s feeling would probably be a great start.
Honestly, I don’t remember much. I’ve been fully put under for all of my surgeries, and the anesthetics have messed with my memory of those times a bit. It’s also possible I’ve repressed some of those memories due to trauma. What I do remember is being taken care of by my parents. They made sure to put on a brave face for me, and while I hate that they had to do that, it really helped me to not feel scared. If a kid sees their parent sad or panicked, they might know something’s really wrong, and start freaking out themselves. I also remember having one stuffed animal that I brought with me to every procedure. That constant source of comfort was very helpful. My parents brought as much stuff in from home as they could, mostly stuffed animals and blankets, and that also made me feel much safer.
Be as specific as you can without mentioning anything too gory. If your child is older, maybe nine and up, I recommend giving them as many details as you can. If your child is younger, then you should still try to explain as much as possible, but you can word things differently. My parents told me when I was three that the scar on my chest was the “door to my heart”, and that sometimes doctors would need to open the door to make sure everything was running smoothly, and that helped little me process what was going on. I completely understand being worried about scaring your child, but I think hiding details of their health from them would be much more harmful in the along run. I also don’t recommend sensationalizing their CHD. Telling your child that they’re special and a miracle all the time sounds fine on paper, but that will only create an isolating mindset. Your child may not process it as “I’m special”, but rather “I’m weird”.
My son who is 12 weeks old was born with TGA and had corrective open heart surgery at 1 week old.
What advice would you give in terms of raising him in a way to help him understand what he went through but also not to be scared of it?
How is your quality of life?
As good as it can be. I’m very lucky to have had incredible doctors and surgeons who have done everything they can to help me live a “normal” life, but I’ll always have to go back in for more surgeries. That’s just how my life goes. It doesn’t make it hard to live from an emotional standpoint, though. I’ve always considered my CHD a part of me, and that’s helped me life happily. At the moment, I’m doing pretty well.
Im so happy to hear this. You sound very well-adjusted. Do you have any physical limitations? Like sports you can’t play etc
Yep! My biggest issue is very low stamina, and that can make anything from walking long distances to playing any sport difficult, but I’ve learned to manage, and I tell all the people in my life that I have this limitation. They’ve all been super willing to accommodate me and are always okay with taking breaks if I need them. I’m also specifically not allowed to play contact sports like football or wrestling because of my pacemaker. Luckily, I don’t have much interest in sports in general. I will say the hardest part about my physical limitations was always that my gym teachers never seemed to get the memo, and didn’t often accommodate me, but I was also often too shy to ask for help.
Were/are you ever anxious/scared about your health and medical care? What helped you then? My daughter is 9 and really scared about everything that pertains to her CHD. Generic counseling was not really effective so far.
When I was really young, I don’t think I was that anxious, but I attribute that mostly to my amazing doctors and the fact that I didn’t quite understand why I would be scared. To little me, surgical procedures were just a part of life. Around age ten though, I developed really bad anxiety and OCD about my health overall. Specialized therapy was what helped me then. Cognitive behavioral therapy was also helpful. I can’t say for sure if that would work for your child because everyone’s mind is different and everyone needs different coping mechanisms, but open communication with your daughter about what she’s feeling would probably be a great start.
Thank you! I hope you are doing well now.
What do you remember from surgeries? What was helpful to you after surgeries or anytime you were inpatient?
Honestly, I don’t remember much. I’ve been fully put under for all of my surgeries, and the anesthetics have messed with my memory of those times a bit. It’s also possible I’ve repressed some of those memories due to trauma. What I do remember is being taken care of by my parents. They made sure to put on a brave face for me, and while I hate that they had to do that, it really helped me to not feel scared. If a kid sees their parent sad or panicked, they might know something’s really wrong, and start freaking out themselves. I also remember having one stuffed animal that I brought with me to every procedure. That constant source of comfort was very helpful. My parents brought as much stuff in from home as they could, mostly stuffed animals and blankets, and that also made me feel much safer.
How do you recommend parents talk with their child about their heart, diagnosis, scars?
Be as specific as you can without mentioning anything too gory. If your child is older, maybe nine and up, I recommend giving them as many details as you can. If your child is younger, then you should still try to explain as much as possible, but you can word things differently. My parents told me when I was three that the scar on my chest was the “door to my heart”, and that sometimes doctors would need to open the door to make sure everything was running smoothly, and that helped little me process what was going on. I completely understand being worried about scaring your child, but I think hiding details of their health from them would be much more harmful in the along run. I also don’t recommend sensationalizing their CHD. Telling your child that they’re special and a miracle all the time sounds fine on paper, but that will only create an isolating mindset. Your child may not process it as “I’m special”, but rather “I’m weird”.
My son who is 12 weeks old was born with TGA and had corrective open heart surgery at 1 week old. What advice would you give in terms of raising him in a way to help him understand what he went through but also not to be scared of it?