I am 62yrs old and diagnosed at a very young age. Maybe by 3 months of age. My parents did a lot of things right for them to be as young as they were when I was born.
My mom and my dad talked freely about my heart condition to me. They explained it in terms that I could understand and as I got older my mom explained the diagnosis and the procedures that were done.
My parents never discussed death with my heart condition. They would always prepare me for any procedure like a cardiac cath or for my final heart repair surgery at age 13yrs. The thought of death never entered my mind. Going in for cardiac caths became routine for me. I always went home from the hospital.
My mom was always with me for my yearly check ups. My mom explained to me why I couldn’t exert myself. I did feel alienated in elementary school when I was not aloud to do the exercises everyone else was doing at the beginning of recess.
I wish my parents would have had the resources and the support that is out there now. Parents need to be aware of what living with CHD does to a person mentally and how they may feel lonely at times. I am just now realizing the effect it has had on me mentally and why I learned to be ok with being alone. To this day sometimes I just want to be aloner.
My mom was my advocate at school. She made sure that there was a letter from the cardiologist filed in the school office regarding my limitations due to my heart condition and that the principal was aware of. When I was in the third grade we would go out for recess and everyone had to run around the backstop in the field before they could play. A teacher that was not my teacher told me to go run. I told her I couldn’t because I had a heart condition. She told again to go run and I told her again I couldn’t because I have a heart condition. She told me to go run a third time, so I did. When my mom came to pick me up from school that day I didn’t have to tell her what happened she could tell already just by looking at me. She asked me, “what happened at school today?” So I told her. She turned right around and and went to the principals office and gave him a piece of her mind. She probably was a little overprotective but sometimes she had to be.
My two sisters I am sure they felt neglected during my open heart surgery in 1974. I was in the hospital for a month. My mom was at the hospital everyday until I went home. Of course back then the pediatric hospital had strict visiting hours and no child could visit. That made it really hard. Hospitals today are more lenient regarding visitors so, don’t leave siblings out of the process. Educate the siblings along with the child with CHD.
I am 62 years old and was diagnosed with CHD when I was 3. One of my earliest memories is being in the hospital for a catheterization and how scary it was to be away from my parents, I was 3 at the time. Those were the "dark ages" because I had to be put in a hypothermic state for the procedure, so I was packed in ice. To this day, I don't tolerate cold well. I went on the have surgeries at 11, 14 and 45.
What did my parents do right? I think my parents were very open and forthright with me regarding my treatment and associated risks. They were very supportive, loving and understanding of my fears. I don't feel like they ever sugar-coated anything. They encouraged me to ask questions of my doctors and to learn and understand as much as possible about my condition. They taught me to be a strong advocate for myself.
What could my parents have done differently? While they encouraged me to do the things I liked doing, I felt that they were overprotective and that I didn't really get to spread my wings until I was in my 20's. When I told them I was going hiking and camping for the first time, they tried to talk me out of it, I was 24. I did it, had to prove to them and myself that I could. I have a younger sister and I feel like she was short-changed a bit when we were growing up. I was always more doted on by my parents and protected and I think that hurt my sister. To this day, I believe there is still some underlying resentment. Parents, make sure that your other kids are not feeling left out. The one thing I really wish my folks would have done is to have me see a therapist after my first surgery. Facing your mortality at 11 isn't easy, and there wasn't really anyone I could talk to that about. We were not a religious family, so I didn't have that avenue. I think talking with someone would have been very beneficial, I needed to express my feelings to someone outside of the family. Many years later I was diagnosed with PTSD and my dad actually apologized for not finding someone for me to talk to early on.
At the current time, I keep my mom (my dad passed in 2007) apprised of my situation if there are any changes and, I know, she will be there to support me if I need her.
All this said, my parents did the best they could given the circumstances and the times. They were young parents and were forced to grow up quickly due to my condition. Hindsight is 20-20 and, I'm sure, if they had to do things over again, they might handle things differently. And, on last thing I would say is, this is a lifelong journey. You need to prepare for that and give your kid the best tools you can so they can make the best decisions for themselves going forward in their lives. Don't be afraid to question and get second opinions.
1. What would I tell a parent who’s raising a child with a heart condition today? I’d say to have the open conversations about what they have, how to explain it, and to be vocal in trusting their body. What I mean by trusting your body is- if something feels off “SAY SO!” It can lead to miracles of catching “problems” early.
When I was 14 going on 15 a nurse had told us about a summer camp for kids with CHD-That camp changed my life! ❤️ I would tell CHD parents to get their child involved in support groups, camps, etcerra. I wish I’d had more time at that camp as a young child- it started with kids age 5-17...basically get them a support group.
2. What did your parents do right? My Mom did a great job of balancing the scales of trying to make me feel “normal” , but also teaching me to embrace my heart problem and scars. She says I was never self conscious of my scars on my own, but believe she had to have had some influence in it through body positivity and never limiting my clothes even if it showed my scar. 💖
3. What might they have done differently?
She was a bit overprotective, but she did her best with the knowledge she was given.
I think doctors (at that time) were having her encourage me to be more cautious. I wasn’t allowed to take PE starting from Junior high into High School, which I really feel negatively impacted me. I wish someone had taught me that it was okay to move my body that I wouldn’t break from running, dancing, or being active. In my early 20s is when I was learning how to workout and move my body…it was a trial. Fast forward to today, and I love weight lifting, walking, pilates and yoga. As you had mentioned, I wish there had been more access to mental health sources(again it was the times.)
4. How are they involved in your care now? My Mom doesn’t go with me to appointments now, as it’s usually routine appointments. However, whenever something is going awry (such as now- my oxygen levels are misbehaving) she does come. I get to optimistically get my levels fixed first week of June via the catheterization procedure. Yay! This brings me to my next point- prepare your child for routine maintenance such as appointments and surgeries (like a car) and maybe a new toy for every procedure haha, it always helped me. I got a new Barbie every time 😂 It sounds silly, but it made it less scary.
I am a nurse and have worked in a pediatric hospital and on a large pediatric unit in another hospital in the past. While working there I would always hear about the different camps for the kids but never did I hear of a CHD camp. That would have been nice when I was younger. I was an older adult before I ever met Anyone else with CHD.
No way! Can I go! I’ve never heard of a CHD camp. Never heard of a CHD doctor until recently when it was determined I need a redo surgery at 65. I would LOVE to be part of this camp; help the kids. How do I learn more?
It was truly a blessing. One of the nurses at my cardiac visit told me about it and on top of that I shared a locker in woodshop with a friend who went to the camp as well…it was a full circle moment.
Your three points were spot on for me. In all honesty, everything you’ve written about the heart is nearly identical to my experience minus the actual diagnosis. I grew up feeling like I was broken but in an extremely special way. It wasn’t until I was an adult, married, with kids that I started to connect, even if it’s just through stories, with others with CHD. It’s a tough, lonely journey. My parents did so many things right, but I wish we could have spoken about it more, that I had pictures from my surgeries, that I was able to find community earlier, that I wasn’t always the one to bring up the subject and despite their best efforts, even as an adult, I feel like my heart condition is a burden on my family. It’s taken so much from us, in time, and worry and mental space and given back so little.
I am 62yrs old and diagnosed at a very young age. Maybe by 3 months of age. My parents did a lot of things right for them to be as young as they were when I was born.
My mom and my dad talked freely about my heart condition to me. They explained it in terms that I could understand and as I got older my mom explained the diagnosis and the procedures that were done.
My parents never discussed death with my heart condition. They would always prepare me for any procedure like a cardiac cath or for my final heart repair surgery at age 13yrs. The thought of death never entered my mind. Going in for cardiac caths became routine for me. I always went home from the hospital.
My mom was always with me for my yearly check ups. My mom explained to me why I couldn’t exert myself. I did feel alienated in elementary school when I was not aloud to do the exercises everyone else was doing at the beginning of recess.
I wish my parents would have had the resources and the support that is out there now. Parents need to be aware of what living with CHD does to a person mentally and how they may feel lonely at times. I am just now realizing the effect it has had on me mentally and why I learned to be ok with being alone. To this day sometimes I just want to be aloner.
My mom was my advocate at school. She made sure that there was a letter from the cardiologist filed in the school office regarding my limitations due to my heart condition and that the principal was aware of. When I was in the third grade we would go out for recess and everyone had to run around the backstop in the field before they could play. A teacher that was not my teacher told me to go run. I told her I couldn’t because I had a heart condition. She told again to go run and I told her again I couldn’t because I have a heart condition. She told me to go run a third time, so I did. When my mom came to pick me up from school that day I didn’t have to tell her what happened she could tell already just by looking at me. She asked me, “what happened at school today?” So I told her. She turned right around and and went to the principals office and gave him a piece of her mind. She probably was a little overprotective but sometimes she had to be.
My two sisters I am sure they felt neglected during my open heart surgery in 1974. I was in the hospital for a month. My mom was at the hospital everyday until I went home. Of course back then the pediatric hospital had strict visiting hours and no child could visit. That made it really hard. Hospitals today are more lenient regarding visitors so, don’t leave siblings out of the process. Educate the siblings along with the child with CHD.
Thank you for sharing, Cindy. That is such a good point about siblings, too.
I am 62 years old and was diagnosed with CHD when I was 3. One of my earliest memories is being in the hospital for a catheterization and how scary it was to be away from my parents, I was 3 at the time. Those were the "dark ages" because I had to be put in a hypothermic state for the procedure, so I was packed in ice. To this day, I don't tolerate cold well. I went on the have surgeries at 11, 14 and 45.
What did my parents do right? I think my parents were very open and forthright with me regarding my treatment and associated risks. They were very supportive, loving and understanding of my fears. I don't feel like they ever sugar-coated anything. They encouraged me to ask questions of my doctors and to learn and understand as much as possible about my condition. They taught me to be a strong advocate for myself.
What could my parents have done differently? While they encouraged me to do the things I liked doing, I felt that they were overprotective and that I didn't really get to spread my wings until I was in my 20's. When I told them I was going hiking and camping for the first time, they tried to talk me out of it, I was 24. I did it, had to prove to them and myself that I could. I have a younger sister and I feel like she was short-changed a bit when we were growing up. I was always more doted on by my parents and protected and I think that hurt my sister. To this day, I believe there is still some underlying resentment. Parents, make sure that your other kids are not feeling left out. The one thing I really wish my folks would have done is to have me see a therapist after my first surgery. Facing your mortality at 11 isn't easy, and there wasn't really anyone I could talk to that about. We were not a religious family, so I didn't have that avenue. I think talking with someone would have been very beneficial, I needed to express my feelings to someone outside of the family. Many years later I was diagnosed with PTSD and my dad actually apologized for not finding someone for me to talk to early on.
At the current time, I keep my mom (my dad passed in 2007) apprised of my situation if there are any changes and, I know, she will be there to support me if I need her.
All this said, my parents did the best they could given the circumstances and the times. They were young parents and were forced to grow up quickly due to my condition. Hindsight is 20-20 and, I'm sure, if they had to do things over again, they might handle things differently. And, on last thing I would say is, this is a lifelong journey. You need to prepare for that and give your kid the best tools you can so they can make the best decisions for themselves going forward in their lives. Don't be afraid to question and get second opinions.
Thank you so much for sharing, Kim. I'm sure your message will help a lot of readers.
1. What would I tell a parent who’s raising a child with a heart condition today? I’d say to have the open conversations about what they have, how to explain it, and to be vocal in trusting their body. What I mean by trusting your body is- if something feels off “SAY SO!” It can lead to miracles of catching “problems” early.
When I was 14 going on 15 a nurse had told us about a summer camp for kids with CHD-That camp changed my life! ❤️ I would tell CHD parents to get their child involved in support groups, camps, etcerra. I wish I’d had more time at that camp as a young child- it started with kids age 5-17...basically get them a support group.
2. What did your parents do right? My Mom did a great job of balancing the scales of trying to make me feel “normal” , but also teaching me to embrace my heart problem and scars. She says I was never self conscious of my scars on my own, but believe she had to have had some influence in it through body positivity and never limiting my clothes even if it showed my scar. 💖
3. What might they have done differently?
She was a bit overprotective, but she did her best with the knowledge she was given.
I think doctors (at that time) were having her encourage me to be more cautious. I wasn’t allowed to take PE starting from Junior high into High School, which I really feel negatively impacted me. I wish someone had taught me that it was okay to move my body that I wouldn’t break from running, dancing, or being active. In my early 20s is when I was learning how to workout and move my body…it was a trial. Fast forward to today, and I love weight lifting, walking, pilates and yoga. As you had mentioned, I wish there had been more access to mental health sources(again it was the times.)
4. How are they involved in your care now? My Mom doesn’t go with me to appointments now, as it’s usually routine appointments. However, whenever something is going awry (such as now- my oxygen levels are misbehaving) she does come. I get to optimistically get my levels fixed first week of June via the catheterization procedure. Yay! This brings me to my next point- prepare your child for routine maintenance such as appointments and surgeries (like a car) and maybe a new toy for every procedure haha, it always helped me. I got a new Barbie every time 😂 It sounds silly, but it made it less scary.
-Elise George
I am a nurse and have worked in a pediatric hospital and on a large pediatric unit in another hospital in the past. While working there I would always hear about the different camps for the kids but never did I hear of a CHD camp. That would have been nice when I was younger. I was an older adult before I ever met Anyone else with CHD.
No way! Can I go! I’ve never heard of a CHD camp. Never heard of a CHD doctor until recently when it was determined I need a redo surgery at 65. I would LOVE to be part of this camp; help the kids. How do I learn more?
It was truly a blessing. One of the nurses at my cardiac visit told me about it and on top of that I shared a locker in woodshop with a friend who went to the camp as well…it was a full circle moment.
Thank you, Elise! Good luck with the upcoming procedure. ❤️
Thank you Leigh! 💖
Your three points were spot on for me. In all honesty, everything you’ve written about the heart is nearly identical to my experience minus the actual diagnosis. I grew up feeling like I was broken but in an extremely special way. It wasn’t until I was an adult, married, with kids that I started to connect, even if it’s just through stories, with others with CHD. It’s a tough, lonely journey. My parents did so many things right, but I wish we could have spoken about it more, that I had pictures from my surgeries, that I was able to find community earlier, that I wasn’t always the one to bring up the subject and despite their best efforts, even as an adult, I feel like my heart condition is a burden on my family. It’s taken so much from us, in time, and worry and mental space and given back so little.
Oof, "broken but in an extremely special way" really hits me. Thank you, Melissa, for sharing.