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Carrying the Weight of 'Survivor's Guilt' as a Man With Congenital Heart Disease

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Survivor’s guilt — who would think of that? For me, I always I think of survivor’s guilt when you hear stories of September 11th or a plane crash that very few get to walk away from. But what about congenital heart disease (CHD), the birth defect that is more common than any other on this planet. The guilt can be intense because with CHD there is often enough time between birth and death to give guidance and hope to those patients or parents who are suffering.

But what do you say to a parent who has suffered immeasurable loss after you tried to give them so much hope? How do you justify in your mind that you are still alive even though your condition seemed worse than a child who just passed and you are in your 30s? How can we, being the older generation, be the light at the end of the tunnel when so many only get a glimpse of the light?

Congenital heart disease is a killer. The number one birth defect related killer. Maybe that is why many of us feel so empty all the time. I had too many times when I don’t know what to feel when a child with CHD passed away, and unfortunately, there are much more to come. I felt it for my sister who passed with a similar heart defect to me while my parents were trying to expedite her adoption process to ensure she was on the transplant list. Every loss of life takes your breath away, but when it is a child, it makes it hard even to stand. How can the world be so cruel and why am I still here?

I have never quantified it until my good friend posted about another CHD child losing their life and how hard the survivor’s guilt was on her. It was a quick slap across the face — that is what I had been feeling. Sure, I grieve for the loss of life, but when it comes to CHD, it is deeper, far deeper for me. Why? Why am I the one who wasn’t supposed to make it and did? Why did the baby of the family I was trying to give hope to pass? Why did the child that was healthier than I already go through the same amount of operations as me, losing parts of his limbs, even though I am 33 years older and still have all my limbs?

Has medicine not advanced as we thought? Or is the information we have as patients and parents not so evident that we can make informed decisions? In the case of complex CHDs, it is both, but we can work to change how and where our kids or we get care. It is a complex world, and often there are many obstacles in our way including our government and private insurance companies. But we must stand up and fight for our care and seek to educate those who just entered the arena of CHD. I believe those are the people we need to reach first before they get inadequate care, before their
child is one of those that we grieve.

The hospital you go to matters! Volume matters! Public reporting about surgical outcomes matter! Survival rates matter! Don’t settle for what is convenient settle for the best care you can get, period! I will fight until I die to get this information and knowledge to all. I commend the PCHA on their efforts to get us the data we need; it is information that every parent and patient should be seeking out.

I never knew how to define my feelings until I read a post from a dear friend — I hate survivor’s guilt. It takes me down like no other. Even if the patient is alive, when you see their quality of life significantly diminished beyond repair, there is still guilt present. I don’t know how you define it, but it doesn’t matter. We need more of everything in the CHD world! Everything from funding, research, support, data and reporting, transparency, insurance coverage, and access to any hospital we choose. Until we have all of those, we won’t stop fighting. Survivor’s guilt has no end, and for many of us, it began before we ever knew what it was. But I can promise you it will be one of many motivations for me to make changes in the CHD world.

While I carry a heavy weight of guilt, I also carry those lives as motivation to keep me moving forward as a CHD advocate. I will fight for those we lost and those that live until the day I get called home, I can promise you that.

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Originally published: February 10, 2017
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