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  • Writer's pictureKaty Key

I Am a Heart Mom

I am a heart mom. I couldn’t even tell you what that meant 4 years ago. I had vaguely heard about a kid or two that I went to school with who had a hole in their heart, but it didn’t seem all that serious when I was younger. I had no idea the world that I would enter with my baby.

See, 4 years ago, I was pregnant with my first child, and blissfully unaware that an anatomy scan could tell you something besides whether that special child was a boy or a girl. I didn’t realize it wasn’t typical when the tech scanned his heart multiple times, and spent over an hour on our scan that it was a problem. Even when our OB told us that I needed to go to Community Hospital to receive special pictures since they, “didn’t get all that they needed to see of his heart,” Jordan reassured me that it was fine. Perfectly normal.

Except it wasn’t, and you probably know what followed.

Sitting in a cold room with a MFM specialist telling me that my son probably wouldn’t make it, and giving me options. I remember going home, crying, watching old Disney movies, and trying to decide how I would make decisions with his life. I’ve never felt so unprepared in my life. I became a heart mom. I researched, planned, and researched some more. I talked to amazing doctors at Riley, who gave me so much hope.

That feeling of being unprepared followed me the night before his c-section. I sat in his nursery, and thought that as a first time mom, this was a bit much. I didn’t know how to parent a child with a healthy four-chambered heart, let alone one who didn’t. I just had to have faith.

Then he was born.

I remember hearing him cry, and being wheeled to recovery. I remember kissing his tiny newborn hand before they took him to Riley in an ambulance. I recall sitting in a labor and delivery room without a baby, and listening to the cries of all of the little ones who were staying with their mom in the room next door. I also remember Jordan calling and saying that Colton was not doing so well, now they were intubating him, and me sitting in my L&D room unable to do anything. Helpless. I was not sure to do, and I’m sure it showed. We made it through one heart surgery at 3 days old with our newborn son, and countless other sticks, vitals checks, and procedures. I learned about oxygen sats, drainage tubes, and how to feed a child through a tube. I became a heart mom.

The day of my son’s last surgery, I handed my child over to a team of people that would take him to a sterile OR, stop his heart, and mend him. I’m always amazed as a mom that I was able to do that without hesitation, without running down a hallway after him and looking insane, but I did. Less than a 1% mortality rate, and of all procedures, I felt this one would go smoothly. I honestly never thought that I would lose him. If I’d have known that, I would give one more kiss, one more hand squeeze, one more look at his beautiful hair and eyelashes. I would read him another book, sing him another song, let him stay up later.

I would soak up every moment because I had no idea those would be our last.

I often heard as I was going through our journey with Colton, “There’s no way that I could do what you did.” “I don’t think I could do it having a child in the hospital, and relying on other people to care for him.” I’m here to say none of those statements are true. See, the day before my child’s CHD diagnosis, I wasn’t a heart mom. I didn’t choose this, and if I could’ve kept him here, I would 1,000 times over. Kids like Colton deserve for the word to be spread about CHD. The more awareness there is, the more research is able to be done, and maybe another parent won’t have to say goodbye to their precious child. I am a heart mom. And I will continue to spread the word about CHD’s as long as I’m on this Earth, because no parent should have to attend their child's funeral.


Congenital heart defects affect approximately 1 in 110 children. February is CHD Awareness month, and is the perfect time to learn about CHD's, donate to the cause, and help fund more research to help these special kids.

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