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!!

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 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.

Dear Zandy et al,

While I can't say I know what it's like to walk in any of your shoes, I can say this much as a pediatric heart surgeon who has been doing this for over two decades:

1. There has been much progress over the last two decades, new techniques like new valve repair options, completely new concepts like valve transplants, and new technologies…  much room for optimism. And in the same stride, we have gained great experience and comfort with challenging problems we didn't have before.
2. No matter what anyone says- you are going to worry because you are a mom; but worrying doesn't change the future. As a mom, you are strong and resilient; you have superpowers when it comes to your kiddo that translates into finding/searching for solutions which amplifies optimism.
3. kiddos with CHD are so resilient; and in my experience even if they don't verbalize it, they know what's going on. Trust they can handle it and because they know you are standing with them every step of the way, they may still be scared or worried, but they have faith and confidence because of you. 

Sometimes docs say they have dragged their feet long enough when what they are intending to say the risk/benefit ratio is changing; everything, including medications etc have risk/benefit. With surgery one wants to hold off until absolutely necessary and aims for best long term option. 

Sending you positive thoughts and well wishes. Hopefully, you are a little less worried from all the content you have read here. 
with best wishes, 

Pirooz Eghtesady