Half-heart, Whole Body: Part One, A Poster Child Retires

During my first pregnancy my son was diagnosed with congenital heart defects that were “incompatible with life.” Through the following years of multiple open-heart surgeries and other invasive surgical procedures on and around his heart, I was very open about his medical history because I wanted and needed to be understood. I needed people who didn’t know anything about CHD to know about it. I was living through something I never expected when I longed to be a mother. What came of that was a connection with others living the same type of experience. In my selfish need to connect, my connections helped others with the same needs, and I founded two nonprofits and wrote a book. I made a lot of lemonade the first seven years.

That synergy of connecting with others led to messages from all over the world from people who connected with my book. Many people tell me that sharing our family’s experience helped them understand their own experiences better. I don’t regret writing the book, but what I wrote covered a discrete period in time that, though entirely real and true, has now passed.

We are not parenting a baby/toddler anymore. My child is not cured, and his health condition and our family’s acceptance and coping with it is a permanent part of our lives as long as he’s living. That’s a big truth to swallow, and if my book helps people taking the same bitter pill, then I am happy for that, but things have changed. My son is now nearly eleven-years-old, about to finish elementary school, and not remotely interested in being the poster-child for anything other than the next big Star Wars everything. I am in a different place too. Now that I’m parenting a tween, my point of view is no less relevant than when I was pregnant. However, my son’s privacy is more important than my perspective. His emotional and developmental needs are growing more complex. Now I’ve finally found the strength to trust my friends and family who haven’t lived through this to validate my experience. I couldn’t do that when it was still so new.

That’s a revealing truth isn’t it? I couldn’t trust anyone who hadn’t lived through submitting their child to life-or-death surgery because the only alternative to surgical risk was certain death to understand and support my emotional needs. My needs are no longer as great as they once were, and I the support I’m getting closer to home is more than sufficient now. It’s not that the non-CHD support I received was lacking in the past, it was that my need was as enormous as my trauma as a terrified new mother whose child’s most vital organ was incompatible with life. That was a pretty emotional tall order. This far out, I’m no longer living through a trauma. I’m dealing, and I’m blessed to be surrounded by loving family and friends who give me the strength I need to be the parent my children need.

Things are different for all of us now as we’ve aged and matured as a family. Recently, I’ve edged away from being as vocal or sharing our family’s experiences. The last few months I’ve struggled with sharing too much about our family and with sharing nothing at all. Cold turkey seemed the easiest solution to this challenge and, honestly, I could have lived with that. But that’s not the right answer either because we are not the only family fighting CHD, even if we’re on temporary leave from our time in the trenches.

Now, I’m seeking the right balance because there are other mothers, fathers, and adult CHD survivors who need to know things I know, not my opinions, but my knowledge. Now, it’s not just about the emotional validation or the healing of trauma, it’s about emerging science and facts that might save a child or young adult’s life. I know these things not because I’m somehow superior or genius. I know these things because I’ve advocated for my child and for the CHD cause for more than eleven years, and I’ve engaged with many knowledgeable people.I’m also advantaged in having an advanced degree in and many years experience communicating science and technology.

So, where does that leave me balancing my dual identity as a parent and an advocate? Where does that leave my non-poster child? Right here, at the end of a post where I never used my son’s name. Yes, you can easily find it out if you really want to, but what I’ve shared about my son’s personal life ends here. What I share going forward will be about CHD, my own feelings as a parent and writer, and other health advocacy topics. Sometimes, by necessity, the information I share will come from our experiences with my son’s doctors and healthcare. However, in those cases, I will only share generalities, not specifics. I’ll tell you why services or interventions are being offered for children like my son, not necessarily about him and not his specific situation.

I can’t quit CHD because it won’t quit my kid without taking him from this world. That’s my reality, but my kid deserves to be a kid and not worry about this shit until he has to. He will have to, but for now he doesn’t. This kid has more than earned his childhood and fought for his life; time to let him live it. My poster child has officially retired. He wishes you well and his message to other CHD parents and kids is, “Good, life is,” while channeling his inner Master Yoda.

I’m still here, and I’ve got some news about brains and livers to share with you in parts two and three. Hope you’ll come back and learn with me, and thanks for being on our journey up to this fork in the road. There was a moment eleven years, three months, and fifteen days ago when I felt alone in the world, but I’ve not felt that way since. Feeling good, I am. Now I hope I can help others feel better.

Next time: Half-heart, Whole Body: Part Two, Tin Men & Scarecrows, Hearts & Brains





  1. Amanda, thank you for this article. I can relate so much. I didn’t realize that’s why I needed the CHD community, because my fears were too big and I needed so much validation from people ‘in the know’. As with your family, my son’s life is much fuller now that he’s “practically 10” according to him. I support and respect your decision to grant your son the right to be a tween boy. I think I’ll follow your lead (as usual).

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