Mended Little Hearts Open Forum

My 16yo son was born with 6 congenital heart defects we didn't know about until he went into distress immediately after being born. Three of the problems were able to be fixed, coarctation of the aorta, the vsd, and something else I can never remember. He still has Ebstein's anomaly, total anomalous pulmonary venous return (TAPVR), and a bicuspid aortic valve...my sweet baby. For all intents and purposes, he was a regular kid after the surgeries; no medications, minimal restrictions. And what little restrictions he had were all lifted when he was 5. Up until last year I had basically forgotten he was a heart patient except for his check ups. I didn't realize surgery was back on the table and in fact a reality that will have to happen again, possibly soon. I was in shock. Almost as if this were a whole new illness I was just hearing about. Now I find out his heart has enlarged. And in fact, "we have to stop dragging our feet," when I didn't realize anyone was dragging their feet about anything. I thought this was just another check up. Now I'm scared and I never really was before. Before, things happened too fast to be able to think about them. Now, I'm careening into this fast approaching situation and I feel out of control because now this MRI has to happen next week! But everything is completely normal because I can't scare him with it. Now I'm looking at resources my cardiologist was suggesting 16 years ago. Now I'm reaching out because I'm scared. 

I'm sorry about the sudden shock of the change of game plan. I'm sure it is very jarring for everyone. My daughter had coarctation of the aorta and aortic valve stenosis/univalve. She had open heart surgery at 5 days old. Other than 2 ballon caths, she only remembers all of ECHOs and appointments. She does have other health issues, so there is no illusion that she's just another kid. I know everyone is different, but even though she 8, she does best when we talk to her directly and tell her clearly what is going to happen. She doesn't like surprises and likes time to ask questions for herself. 

I would say take care of yourself as well because of course you have plenty of feelings around this too. Each time we go to cardiology, I hold my breath bc she will need future intervention. The not knowing when is the worst part. 

Beat of Luck!!

My 16yo son was born with 6 congenital heart defects we didn't know about until he went into distress immediately after being born. Three of the problems were able to be fixed, coarctation of the aorta, the vsd, and something else I can never remember. He still has Ebstein's anomaly, total anomalous pulmonary venous return (TAPVR), and a bicuspid aortic valve...my sweet baby. For all intents and purposes, he was a regular kid after the surgeries; no medications, minimal restrictions. And what little restrictions he had were all lifted when he was 5. Up until last year I had basically forgotten he was a heart patient except for his check ups. I didn't realize surgery was back on the table and in fact a reality that will have to happen again, possibly soon. I was in shock. Almost as if this were a whole new illness I was just hearing about. Now I find out his heart has enlarged. And in fact, "we have to stop dragging our feet," when I didn't realize anyone was dragging their feet about anything. I thought this was just another check up. Now I'm scared and I never really was before. Before, things happened too fast to be able to think about them. Now, I'm careening into this fast approaching situation and I feel out of control because now this MRI has to happen next week! But everything is completely normal because I can't scare him with it. Now I'm looking at resources my cardiologist was suggesting 16 years ago. Now I'm reaching out because I'm scared. 

I appreciate your words. I'm a chronic worrier..conversely, I am an eternal optimist.  This new development has put me into a tail spin. I'm feeling better today. I know I'll feel better once we see the doctor again next week, I'll be able to ask more questions and get answers. Fear of the unknown. I want my son to know what's going on with him, he'll be taking over his own care in no time (ugh). Other people in my family think I'm sharing too much and scaring him. They're also the people that are incapable of talking about feelings so I'm not sure what's right, right now. I just want to make sure everyone is okay no matter what we have to face. Thank you for reaching out, what you said, it makes me feel better being able to get it out. Sending good vibes to you and yours, Nancy =)

I'm sorry about the sudden shock of the change of game plan. I'm sure it is very jarring for everyone. My daughter had coarctation of the aorta and aortic valve stenosis/univalve. She had open heart surgery at 5 days old. Other than 2 ballon caths, she only remembers all of ECHOs and appointments. She does have other health issues, so there is no illusion that she's just another kid. I know everyone is different, but even though she 8, she does best when we talk to her directly and tell her clearly what is going to happen. She doesn't like surprises and likes time to ask questions for herself. 

I would say take care of yourself as well because of course you have plenty of feelings around this too. Each time we go to cardiology, I hold my breath bc she will need future intervention. The not knowing when is the worst part. 

Beat of Luck!!

My 16yo son was born with 6 congenital heart defects we didn't know about until he went into distress immediately after being born. Three of the problems were able to be fixed, coarctation of the aorta, the vsd, and something else I can never remember. He still has Ebstein's anomaly, total anomalous pulmonary venous return (TAPVR), and a bicuspid aortic valve...my sweet baby. For all intents and purposes, he was a regular kid after the surgeries; no medications, minimal restrictions. And what little restrictions he had were all lifted when he was 5. Up until last year I had basically forgotten he was a heart patient except for his check ups. I didn't realize surgery was back on the table and in fact a reality that will have to happen again, possibly soon. I was in shock. Almost as if this were a whole new illness I was just hearing about. Now I find out his heart has enlarged. And in fact, "we have to stop dragging our feet," when I didn't realize anyone was dragging their feet about anything. I thought this was just another check up. Now I'm scared and I never really was before. Before, things happened too fast to be able to think about them. Now, I'm careening into this fast approaching situation and I feel out of control because now this MRI has to happen next week! But everything is completely normal because I can't scare him with it. Now I'm looking at resources my cardiologist was suggesting 16 years ago. Now I'm reaching out because I'm scared. 

My 16yo son was born with 6 congenital heart defects we didn't know about until he went into distress immediately after being born. Three of the problems were able to be fixed, coarctation of the aorta, the vsd, and something else I can never remember. He still has Ebstein's anomaly, total anomalous pulmonary venous return (TAPVR), and a bicuspid aortic valve...my sweet baby. For all intents and purposes, he was a regular kid after the surgeries; no medications, minimal restrictions. And what little restrictions he had were all lifted when he was 5. Up until last year I had basically forgotten he was a heart patient except for his check ups. I didn't realize surgery was back on the table and in fact a reality that will have to happen again, possibly soon. I was in shock. Almost as if this were a whole new illness I was just hearing about. Now I find out his heart has enlarged. And in fact, "we have to stop dragging our feet," when I didn't realize anyone was dragging their feet about anything. I thought this was just another check up. Now I'm scared and I never really was before. Before, things happened too fast to be able to think about them. Now, I'm careening into this fast approaching situation and I feel out of control because now this MRI has to happen next week! But everything is completely normal because I can't scare him with it. Now I'm looking at resources my cardiologist was suggesting 16 years ago. Now I'm reaching out because I'm scared. 

I completely understand what you mean. We've had a similar situation with our son and I, too, was shocked when at 16 I was told he needed open heart surgery to replace his pulmonary valve and put a band around his tricuspid valve (because his heart was enlarging). The good news is that the surgery was just another blip in his life because we were able to time it so it did not impact his schooling. Also, he recovered amazingly quickly.

Unfortunately, we've been hit with another shock now, two years later. The band around his tricuspid valve hasn't helped and he'll need surgery again. We were told there is a surgeon who specializes in this at Boston Children's Hospital and so we will head there when the time comes (we are in NYC).

I NEVER look stuff up online about my son's condition, and I put my full trust in his cardiologist. 

Believe, believe, believe it will be okay.

My 16yo son was born with 6 congenital heart defects we didn't know about until he went into distress immediately after being born. Three of the problems were able to be fixed, coarctation of the aorta, the vsd, and something else I can never remember. He still has Ebstein's anomaly, total anomalous pulmonary venous return (TAPVR), and a bicuspid aortic valve...my sweet baby. For all intents and purposes, he was a regular kid after the surgeries; no medications, minimal restrictions. And what little restrictions he had were all lifted when he was 5. Up until last year I had basically forgotten he was a heart patient except for his check ups. I didn't realize surgery was back on the table and in fact a reality that will have to happen again, possibly soon. I was in shock. Almost as if this were a whole new illness I was just hearing about. Now I find out his heart has enlarged. And in fact, "we have to stop dragging our feet," when I didn't realize anyone was dragging their feet about anything. I thought this was just another check up. Now I'm scared and I never really was before. Before, things happened too fast to be able to think about them. Now, I'm careening into this fast approaching situation and I feel out of control because now this MRI has to happen next week! But everything is completely normal because I can't scare him with it. Now I'm looking at resources my cardiologist was suggesting 16 years ago. Now I'm reaching out because I'm scared.