What Living Day-to-Day is Like for the Parent of a Child With CHD
Unfortunately, congenital heart disease, or CHD, does not follow a specific path with outlined procedures and repairs. It often throws us for a loop and causes us to react in the moment and then live with the fear and flashbacks going forward.
About 6 months ago, Faith told me her tummy was shaking. When I placed my hand on her chest I realized her heart was beating very fast. I called 911 and the paramedics brought us to the local ER. Fast forward through all the details and they ended up performing a cardioversion (shocked her heart back into normal rhythm). We have since developed a plan with her cardiologist about what to do next time which put my mind at ease. That last part is a lie. It was supposed to put my mind at ease but my mind is never at ease.
In the last 1-2 months my husband and I have noticed that her heart rate is lower than her baseline, and even drops into the 40's when she is sleeping. For reference, a 4-year-old's heart rate should not go below 65 beats per minute. It turns out that following a trip to the ER in late January, it was discovered that Faith has something called a junctional rhythm. It was noted on her holter monitor results but wasn't mentioned to us. Over the phone, Faith's Nurse Practitioner told me that her cardiologist said we shouldn't worry and she will explain everything to us when we go to her appointment next week. Or rather, she will explain everything to me since SickKids is only allowing one parent for clinic visits- thanks Coronavirus.
Because I want to understand everything she is saying, I have been studying junctional rhythms and what they mean. I don't want to publish incorrect information so I will wait until I speak with the cardiologist.
The thing is, I am not a cardiologist, or even a doctor. I am just a mom. A mom who wakes up in the middle of the night sweating with her own heart racing because she is terrified that her child's heart rate is going to go so low that it just stops beating altogether. When I open my eyes in the morning I hold my breath until I hear Faith's voice. Because until I know she's awake, I worry about finding her dead in her room. I haven't even said that to my husband because part of me feels like saying it out loud might make it come true. THAT is what it is like to have a child with heart disease. A stable child can become unstable at any given moment, because heart disease is a killer, and yes sometimes a baby killer. And it absolutely, irrevocably changes moms. It comes with a weight so heavy that not even Zeus could shoulder it. And I'm no Greek god. I'm just a mom of a child with heart disease.
About 6 months ago, Faith told me her tummy was shaking. When I placed my hand on her chest I realized her heart was beating very fast. I called 911 and the paramedics brought us to the local ER. Fast forward through all the details and they ended up performing a cardioversion (shocked her heart back into normal rhythm). We have since developed a plan with her cardiologist about what to do next time which put my mind at ease. That last part is a lie. It was supposed to put my mind at ease but my mind is never at ease.
In the last 1-2 months my husband and I have noticed that her heart rate is lower than her baseline, and even drops into the 40's when she is sleeping. For reference, a 4-year-old's heart rate should not go below 65 beats per minute. It turns out that following a trip to the ER in late January, it was discovered that Faith has something called a junctional rhythm. It was noted on her holter monitor results but wasn't mentioned to us. Over the phone, Faith's Nurse Practitioner told me that her cardiologist said we shouldn't worry and she will explain everything to us when we go to her appointment next week. Or rather, she will explain everything to me since SickKids is only allowing one parent for clinic visits- thanks Coronavirus.
Because I want to understand everything she is saying, I have been studying junctional rhythms and what they mean. I don't want to publish incorrect information so I will wait until I speak with the cardiologist.
The thing is, I am not a cardiologist, or even a doctor. I am just a mom. A mom who wakes up in the middle of the night sweating with her own heart racing because she is terrified that her child's heart rate is going to go so low that it just stops beating altogether. When I open my eyes in the morning I hold my breath until I hear Faith's voice. Because until I know she's awake, I worry about finding her dead in her room. I haven't even said that to my husband because part of me feels like saying it out loud might make it come true. THAT is what it is like to have a child with heart disease. A stable child can become unstable at any given moment, because heart disease is a killer, and yes sometimes a baby killer. And it absolutely, irrevocably changes moms. It comes with a weight so heavy that not even Zeus could shoulder it. And I'm no Greek god. I'm just a mom of a child with heart disease.
Comments
Post a Comment