This was originally published at Missing Filter by Basic Pitch on May 5, 2017.
I’ve been thinking about this all day.
Two weeks after my son was born I packed up his diaper bag with far too much stuff, as only a nervous first-time single mother would, and took him to our first well-baby check. It went normally, until the end. He was sleeping well, eating well, he was bright eyed and responsive to stimulus, we weren’t having any digestion issues, he was in the 90th percentile for both weight and length, he was, of course, perfect. Then the doctor listened to his heart and her face changed. She said to me, far more bluntly than I was prepared for, “There’s something wrong with your baby’s heart.” Queen of bedside manner she was not.
Tears immediately welled up in my eyes as I searched for the words to put together a coherent sentence. I was angry, scared, and shocked. She was silent and looking at me expectantly. I finally blurted out, “What do you mean?” She explained that when she listened to his heart it didn’t sound right (seriously, she had the bedside manner of a vampire) and she was going to make an appointment for him at Children’s Mercy in the cardiac clinic within the next week.
I don’t remember what happened after that. The next thing I remember is crying on the phone with my mother trying to explain what had just happened as I pulled in at home. She, being the best faker in the world, remained calm and told me I needed to make the baby an appointment with Dr. Hall. Dr. Hall had been our family doctor since before I was born. He’d been there for every illness and injury my family had seen since 1979. This immediately made sense and I felt stupid for not having thought of it already. Of course, Dr. Hall would know what to do. I immediately got the baby down for his nap and made an appointment for the next day.
We arrived at our appointment early, which I think is the last time I was early for anything in my life, and I felt reassured as soon as I walked into his familiar office. We were ushered to the lone “baby” room in his practice and waited. A very friendly nurse came in and took the baby’s vitals and gushed over him with compliments on both his squishy little cheeks and his happy and content demeanor, winning his anxious mother over immediately.
Dr. Hall came in a few minutes later. He asked to hold the baby and cradled him in the crook of his arm and said, “Oh boy, we got a cute one!” He then did a quick once over, making sure everything was in its place, having a conversation with the baby the entire time. My son was captivated, his little eyes never left the doctor’s face. Then he laid him on the exam table and listened to his heart. He turned to me and said, “Mom, we’ve got a heart murmur.” My eyes immediately welled up again and I asked what that meant for my brand new baby. He told me he wanted me to keep my appointment at Children’s Mercy, but assured me that he had never seen anyone suffer due to a treated heart murmur.
One of the most frightening things in the world is to walk into a pediatric cardiac clinic with your newborn. The time had come and we were at Children’s Mercy for the cardiologist appointment. The waiting room was full of other children, some in wheelchairs, others on oxygen, none looking like the robust and healthy future I had envisioned for my son. I was scared. My mother, who had taken the day off to come with me, was faking positivity like a champ. Once we finished our paperwork, the baby was subjected to a battery of tests. We had our first echocardiogram and EKG that day! We were then ushered into a consultation room to wait for the cardiologist who was apparently going to review and interpret all of the tests and give us our verdict. I was a nervous wreck and by this time my mother was too.
The cardiologist finally came in after what felt like hours, but was likely only about 15 minutes and started the conversation by drawing two large circles on a notepad that had a diagram of a heart on it. She then explained that these circles represented defects in the baby’s heart. They were holes between the chambers allowing blood to pass through and causing the murmur. Now, these were not small holes she drew. They were LARGE. I was stunned, I almost dropped the baby. Fortunately, Grandma was there to save the day.
I kept asking, “What does this mean?” Now I knew, and my mother seemed to know, that I was asking what this meant for the baby. How would it change his life? The doctor seemed to think I did not understand the concept of a hole as she kept trying to redefine it in simpler terms. Finally, when my mother saw the tears again forming in my eyes and heard the frustration in my voice she interrupted and said, “She means, what does this mean for the baby?” The doctor sighed and seemed relieved that I wasn’t actually a moron and said, “Oh, he’s going to be fine. Most of the time kids grow out of this or as their heart grows the holes remain the same size and become far less significant. His activities will in no way be affected.” After resisting the urge to kick her in the shin for not starting there instead of her little illustrations on the notepad, I was relieved. My baby was going to be ok. We still would need to keep an eye on it, but he would be fine.
My son was born with an atrial septal defect, a ventricular septal defect, and a bicuspid aortic valve.
He didn’t ask for these things, no choice he or I made during my pregnancy or in the 11 years he’s been on earth has caused these issues. Fortunately, to date, they haven’t even adversely affected his health. He is a perfectly healthy kid who enjoys all of the activities one would expect an 11-year-old boy to enjoy. He’s played baseball, he loves to ride his bike, chase the dog around the yard, and play tons of video games. He spends most of his summers at the pool swimming for hours on end (with all of the sunscreen in the tri-state area because he did inherit my translucent skin).
Today our House of Representatives voted to take away his medical care. Make no mistake, they don’t know my son, he wasn’t even a flicker of an impression of a thought on their minds as they wrote this legislation but nonetheless, they voted to take his health care away. Because he was born with these defects they fall under the umbrella of pre-existing conditions that can allow insurance companies to deny him coverage. This was one of the many benefits of ACA. It protected my son from being denied coverage. The GOP knows how important this is, they exempted themselves from the repeal.
This is why it is so very important that we continue to resist. This bill hasn’t passed the Senate yet. There is no reason to allow it to. Our senators need to hear our voices on this, every day. Some may be hesitant to do so as no part of this legislation will hurt them, but that is not who we are. We can’t be that. The measure of a society is how it treats its weakest, most vulnerable members. If you need a reason to fight, you can borrow mine.
This is Hank. He deserves so much better than this.