Shelby Herlick's family standing on a dirt road holding hands

Mighty Blog

Raising the unexpected: Charlie’s story of three open heart surgeries

By: Shelby Herlick

Shelby Herlick is an active Families as Partners volunteer and involved in multiple pathways within the program. She is an active member of the Family Advisory Council (FAC), and the current vice-chair. Additionally, she is the chair of the Cardiovascular Experience Team (CVET), a Families as Faculty presenter, a presenter for New Employee Orientation and the CV Family-to-Family volunteer peer support lead. Read more about Shelby’s experience with the unexpected in her blog #IWearRedforCharlie.

I was living in a world of Type-A, the plan must play out perfectly, nothing can go wrong, I have dotted every I, crossed every T, and then BAM! Here’s Charlie.

Charlie was born through a scheduled, 39-week C-section. I was told he was a “healthy” baby. But his breathing, his breathing was just not right, and everything in me could feel it. Just the same, they sent him home with us.

Shelby Herlick in the hospital with Charlie and her other child

It was two months later when that ‘something’s not right’ feeling became the unexpected bomb that would change our lives forever.

During his walk-in clinic appointment, the doctor uttered the words: “Heart murmur.” A week later we would be sitting in The Children’s Heart Clinic hearing the words: “Your son has a serious heart defect” and “We’re admitting you to the hospital.”

My perfectly planned life just blew up in front of me, and I was sure there was absolutely nothing I could do to stop it.

Charlie would proceed to undergo three unexpected open heart surgeries before he was 6 months old. Each time more frustrating, each time more painful, each time more unexpected than the last.

Throughout the hospitalizations, he underwent more tests than I can count, hours of procedures, dozens upon dozens of medications, minor and major complications. I asked questions upon questions, I read every document they handed me, I watched the videos, I learned the procedures, I did the cares and I became a mom of the unexpected.

By the second open heart surgery, I knew what raising the unexpected meant.

It meant everything was harder. It meant missing your other children’s Christmas programs, it meant video chatting for holidays or to say bedtime prayers, giving up outings with friends, quarantining during cold and flu season, choosing a pay check or choosing to care for your sick child, it meant unexpected emergency room visits and unplanned hospitalizations, it meant life was hard and it was painful.

It meant feeling like you are constantly making the wrong decision or disappointing someone. And I let myself sit in that place.

It took me until that third open heart surgery to truly embrace what raising the unexpected meant.

Charlie showing off his muscles

It meant that I got to form new relationships, indulge myself in medical language, and learn an abundance of information about my child. Because my unexpected child was exactly that—my child. It meant that those Type-A planning skills and color-coordinated schedules were going to be quite handy.

It meant that instead of that one monumental moment when your child smiles for the first time, I got four. I got four first cries, four first giggles, four first times holding him, I got them all. And just like every surgery became more painful, more frustrating, every first time became more exciting, more powerful. And I made the choice to move to this place instead, I’m happy here.

Every day, I can picture my helpless baby boy in that post-surgery room. A painful and gut-wrenching image that I can’t forget for the life of me. And next to that image are the millions more of him telling the nurses how to access his port, conversing with his doctors, teaching his friends about his blood, and explaining in great detail how he was shocked. I get to see him dancing in his recitals, performing his own Christmas programs, slugging that baseball over the heads of kids three years older than him.

All of the things that I was so worried about, he’s not.

I GET to raise the unexpected. His name is Charlie.

Charlie and his sister
Alexandra Rothstein