By Angela Eilers
Angela lives in Southern California and is a member of the local Mended Little Hearts chapter.
I’m a heart mom. Eight and a half years ago, I couldn’t begin to tell you what that meant.
Now, 8.5 years after my daughter was born and diagnosed, I can tell you being a heart mom was never a sorority I asked to join but am more than happy to support now that I’ve been initiated.
My daughter, Myka, is our third child. She was born on a Thursday night. By Sunday afternoon, I heard “your child has a congenital heart defect known as pulmonary stenosis.”
Myka was scheduled for a cardiologist appointment upon her discharge from the NICU. I had no idea there were such a thing as pediatric cardiologists.
Three and a half months later, we handed over our 9-pound, failing-to-thrive baby to a team of nurses who would walk her back to a cold, sterile operating room to stop her heart, patch her narrow pulmonary artery and attempt to repair her pulmonary valve.
Thinking about that moment of handing her over still brings me to tears. I had no idea if I’d see her alive again. It was the most difficult four hours I’d had ever experienced.
I came to see my baby in recovery and had never seen more tubes or monitors before for someone so tiny. It was something no parent should see.
I spent each night with Myka. I listened to the drainage tubes and her wincing in the middle of the night. I heard the janitor mopping the floors at all hours. But mostly, I begged her to survive and come home.
Myka had a second surgery at 11 months old. The handing her over to a team of nurses did not get any easier. I’m assuming it never will.
Life with a CHD child initially brought a lot of anger. How could this happen? Why my child? I did everything by the book while I was pregnant!
I felt like no one understands. No one cares. It was a place of doctor appointments, weight checks, checking her breathing while she napped because I was paranoid, worried. Always chronically worried.
I watched our baby grow into a toddler. First steps. First words. I wondered every day: Will I ever see her as a child first and a heart baby second? Every milestone meant so much to us. Every birthday was a gift, and we treated it as such.
I promised Myka before her first surgery if she survived, I would share her story with everyone. The world would know what CHD means and how it impacts a family. I didn’t want another mother to be told “your child has a CHD” and NOT have heard of the term before.
I became involved with American Heart Association as an advocate. I needed to help and make a difference. I wanted to honor my child and what she had been through by doing all I could for the babies who would be born after her with a CHD.
Myka is now 8-and-a-half years old. She plays softball, is in the second grade, ice skates, attends art class, loves to swim and enjoys school.
We’ve had plenty of doctor appointments, echocardiograms, EKG’s, and weight checks since she was born, and we will have plenty more. We’ve watched her share about her “special heart” and embrace her uniqueness.
Now, I see my baby girl as my child first and a heart baby second. We’ve arrived.
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