When Others Wonder If It's 'Worth It' to Parent a Child With a Rare Condition


Last week, I was connected with an expectant mom; she was a sweet mom who had just received a hypoplastic left heart syndrome (HLHS) diagnosis and was planning on terminating. I shared my son’s story with her and the experiences of other kids with HLHS, of how much hope there is with this diagnosis. I was so hopeful she would change her mind. She didn’t say she would; I think she was just making sure she had a complete picture of what an HLHS diagnosis looks like so that she could make an informed decision. Nevertheless, I was so hopeful.

After talking with one of the best programs for treating HLHS in the country and doing further research, she still chose to terminate. I understand objectively why she made the decision she did. This journey is not for everyone. It is hard. Especially if you have other children in the home. I get it.

Even so, I was crushed. It was so hard to look at my amazing little boy and realize that even with seeing him, it might still not be enough for others. How it grips my heart to realize that someday he will realize that people choose to terminate pregnancies solely based on his heart defect. It is saddening to think people will look at the life he leads and might think, “He’s amazing…but yeah, no thanks.”

I don’t begrudge this mom. I understand why she made the decision she did. Still, it hit me at the core.

So, to say I was wrestling with all the feelings going into this week, pretty much sums it up.

Then, this week happened.

In the span of just a little over 48 hours, we lost two amazing HLHSers.

Kate.

kate with Minnie Mouse

Oh, sweet Kate. Kate was a spunky, sweet 5-and-a-half- year-old who had fought through unbelievable odds just to be here. She had survived brain injuries and seizures on top of her heart condition. Yet, her smile, her laughter — it was everything.  She was obsessed with Minnie Mouse and had just gone on her Make a Wish trip to Disneyworld last week. In a world of brave hearts, she set the bar. Her mom, Erica is amazing. She is one of our board members at Sisters by Heart and is a close friend of mine. She is tenacious and fought to get Kate everything she needed to live a full life. Like me, she uses humor to get through stuff. So, clearly, Erica is one of my people. Kate left behind Erica, her father and two sweet brothers, all trying to understand how she was perfectly fine one day and inexplicably gone the next. They are wondering how they move forward without her. My heart is shattered for them.

And Will.

Will smiling

This 7-year-old’s spirit was indomitable. Like Bodie, my son, he was born with HLHS and didn’t get too far before he needed a heart transplant. He had a really rough road to getting that transplant, but he got it in the nick of time. He battled back and finally made it out of the hospital right before Christmas, only to come back after Christmas with what ended up being tumors in his body. He passed away from complications from those tumors. Yes, he was a complex medical kid. He spent almost an entire year in the hospital. But he was a kid who inspired thousands with his smile and his love of football. A kid who, at the end of the day, was just a boy who wanted to play with trucks and cheer on his football team. My heart is broken for his parents, Chris and Meghan, who were by his side every single day of that journey to transplant, who never stopped believing, never stopped fighting, never stopped hoping.

My heart is in pieces right now. This congenital heart defect (CHD) journey is so so hard. In the wake of these enormous losses (not to mention the countless others I hear of every week), I thought back to that expectant mom and wondered, “Was this what she was trying to avoid? This pain. This overwhelming sadness. The loss of children you have come to love like they were your own. The never-ending anxiety and fear surrounding your own child’s future. The grief and agony I am seeing on my friends’ faces this week. Was she right to say no to all of this?”

I have been mulling this question in my head and my heart.

Is it better to just walk away before you’re invested?

Is this, all of the pain and uncertainty, worth it?

And here is the conclusion I reached.

There is so much pain in this journey. There is so much fear. It’s an overwhelming, gripping anxiety.

Just like the break-up doesn’t define a relationship for its entirety, and constantly refereeing fights between siblings doesn’t define their relationship nor your love for them, the pain and the fear don’t define the CHD journey. What defines it is the resilience and spirit of individuals born with CHD. The lessons they have to teach us. It’s unlike anything I had ever known before my son was born. It’s so hard to explain, but people with CHD have this amazing spirit and fight to live and experience life.

If it wasn’t worth it, Kate could never have taught me that brain injuries don’t have to be the end of your story.

If it wasn’t worth it, Will could never have taught me that a kid doesn’t need every toy on the planet to be happy, just to get to watch football with mom and dad. A kid can smile despite everything, and that we as adults, should really take some notes.

If it wasn’t worth it, Brenda and Jake and Jenni and Kenny (and the other adult CHDers I know) could never have taught me that your diagnosis does not define you. It is a part of you, yes, but it does not get to define you.

If it wasn’t worth it, I wouldn’t have joined the bravest tribe I know, my heart moms. Some days there’s the only reason I can keep my head up. They get it.

If it wasn’t worth it, I wouldn’t get to witness miracles on the regular.

If it wasn’t worth it, my daughter wouldn’t get a front row seat to learning about compassion and celebrating our differences.

If it wasn’t worth it, I wouldn’t be given the gift of constantly being reminded that life is short, that kids grow fast, that they only get one childhood and we’re privileged to get spend it with them. That there’s no such thing as too many hugs and too many kisses goodnight.

Do I wish my son had a perfect heart?

Absolutely 100,000%.

(Or as my kids say, “Google %” — I guess that means the highest number you can think of?)

Still, if you ask me with everything I know now, is it worth it?

Hell yes it is worth it. 

Follow this journey on Hope For Baby Bennett

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Getty Images photo via EKSTAZA


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