The Highs are Higher: Parenting a Kid with Congenital Heart Disease

Russell was my first child. I had no experience of the joys of parenthood before he came. I thought I might have an idea as I went about my day as a special education teacher. Students would finally get a difficult concept, and I’d have a rush of pride for them. “This must be similar to watching your child triumph over hard things.” I’d think to myself. I had no idea how far from reality I actually was.

Because Russell was my first, everything I experienced with him was my normal. My introduction to parenthood. I was surprised to find that every triumph felt dizzying and overwhelming. Parenting had deep, deep, sorrowful lows. But dear God the highs were incredible!! I didn’t realize that most of this was due in part to Russell’s heart condition. It wasn’t until I had my second child, Lucy, over four years later, that I realized what was really going on. Comparing their childhoods opened my eyes.

Russell and his little sister, Lucy, in 2017.

The triumphs are bigger, y’all! And I’m not even talking about monumental things, I’m talking about all the things. Everything from grabbing your finger, to pooping (first poops after surgery are a party.), to smiling, to rolling over, to taking a bottle, to eating potato chips, to finding their toes, to giggling, to taking those first steps, to just simply breathing on their own. You do not know the high of parenting until you’ve seen a child go from death’s door to…everything you were told they wouldn’t do.

This doesn’t lessen my second child’s life or accomplishments. She is amazing in her own right. Her personality is big and gloriously funny. She already uses punchlines and sarcasm. And when she reaches a milestone, a wave of joy rolls over me as well, but it’s expected. It’s different.

Our sweet, Lucy girl.

The night after Russell’s first surgery at 10 days old, his heart stopped. Miraculously, amazingly, a rounding cardiologist on anther case happened to be in his room when it happened. Thanks to delayed sternal closure (Read more about delayed sternal closure here.), he was able to peel back the Ioban and administer 10 minutes of cardiac massage to his exposed heart, bringing him back from his flatline. He died. He died and got a second chance. And that was just his first of many.

Even without this harrowing event added on, every child who’s undergone an open heart surgery has experienced a traumatic, near death event. Their hearts are literally stopped, left resting while the surgeon works to save their life. They are tiny miracles, laughing in the face of all the doubters. “Look at me! I’m still here. Bring on your worst.” They seem to quietly, firmly say with their steady gaze from their bassinets in the PICU.

Every milestone they meet is amazing, because they aren’t even supposed to be here. Without modern medicine, these babies, these children, would cease to exist in the world. How can you not be amazed daily by their presence? Every coo, every smile, every tiny grip of your finger. This almost didn’t happen. It’s like living in a parallel universe to the one the doctors warned you about.

Smiles of awe.

If you’re on the outside of the heart parent world, perhaps a friend or acquaintance, don’t be surprised if the shouts of joy in those videos they post on social media are louder than you’re used to.

Yes, it’s completely normal for them to bellow and bawl with joy and disbelief when they see their baby roll over for the first time, months after the “average” child does. And the fact that they posted 50 pictures of their baby’s first foods is probably because their child suffered from an oral aversion and has been gagging on anything in their mouths up until that point.

When their kid enters school, you may roll your eyes at them wallpapering your feed with pictures. But keep in mind that they may have gotten a death sentence at their child’s birth. Each year they progress is unbelievable to them. And yes, quietly weeping with joy at their heart kid’s kindergarten spring concert is totally normal when they didn’t think they’d ever get that far.

Feel free to cheer along just as loudly. You’re witnessing a miracle.

14 thoughts on “The Highs are Higher: Parenting a Kid with Congenital Heart Disease”

  1. I am glad that he is doing so much better. I was crying when I read this post. Now I know how my parents felt. When I had heart surgery as a 2 year old.
    Drs didn’t expect me to live through surgery either, They wanted my parents to get confirmed before I had surgery,

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  2. As a heart mom myself, I could have written this same story. ❤ When my son graduated from HS, it was so huge for me. I never thought he’d be here for that milestone. ❤❤❤

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    • Just going by how I’m reacting to smaller milestones like entering kindergarten, I’m going to be a MESS when Russ graduates from high school! Congratulations to your miracle boy for graduating!

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  3. Our daughter is now 28 (29 this year) also has repaired Truncus Arteriosus. The celebrations don’t get any less with time.. in fact some of them are even larger and better! We made it to 28 — not without fights, sorrows, worries, multiple, multiple procedures over our time.. You’re doing a great job – keep it up!!

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  4. Modern medicine has given your family (and all of us on the outside looking in) Russell and his glorious triumphs. In 1965, my oldest brother and his wife gave our family a tiny little gift that was not to be so fortunate in his struggles. David was born to immediate heart challenges that rushed he and his Dad 150 miles away to Birmingam, Al to an uncertain future. He came home to a Mom that had not been allowed to accompany him on his first of many emergencies. My brother was like a mother hen, constantly reminding all of us what a challenge it was to feed him without his milk returning through his nose, how we should hold him, how important it was to observe every signal of trouble. I had a healthy, active 18 month old toddler at this time. A constant reminder of what was not to be for David. My brother and his family consisted of parents, an older sister age 11 and an older brother age 8 when David was born. This fragile unit was to exist a mere 6 months when David passed away of meningitis. I and my family of three had moved across country to California when David was four months old, not knowing that it would be the last time we would see him. I am, and will remain, in awe of your brave journey. Thank you for taking us along with you.

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  5. Sadly, we lost our heart-warrior son 34 years ago this coming 2/14. We don’t have nearly enough photos of him and definitely not enough milestones to celebrate. With that said, I’m so grateful that you and your families are sharing yours. We get the fact that what most families consider to be “little” and “cute” are so much more for CHD families. Please keep sharing your triumphs, both great and small, and pray for you all as you continue your families’ journeys.

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    • Hi Nan, I am so sorry for the loss of your son. I lost my brother 18 years ago, and watching my mom work through it, I know it’s not a pain that goes away. <3 Thank you so much for your prayers, they mean so much as we continue on our journey.

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  6. I, like Nan above, lost my heart baby. As I was reading this, I wondered what he would look like now. He was born on Feb 10 and passed just 5 days later on the 15th. His HLHS was so bad, and 27yrs ago they just didn’t know enough. I have just passed the milestone of my first grandbaby and it is a boy which cycles the memories again, not only of what ifs r/t my grandson but also my son, the father. We were so worried it would repeat, the anxiety was great, and the doctor stated that the kinship wasn’t close enough to test to rule out. (full sibling brothers) that I sat in the floor and panicked when I heard he needed O2, luckily only for 20 mins and because he was a C-section. I ramble on, sorry. Anyway, I am so happy for you and your beautiful boy, he looks so happy and pink. Celebrate everything, heck, we even had happy unbirthday parties. Life is precious, and short, at it’s longest. Best wishes

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    • Thank you so much for sharing your story, Susan. These kinds of losses are huge, and I would be lying if I said I didn’t have a sense of “survivor’s guilt” with our currently good outcome with Russell. But with that good outcome, I promise to spread awareness for the lives that were much too short here on earth. We will continue celebrating, knowing that each day is a gift. Thank you so much for stopping to comment. <3

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