Atticus is our three month old son who was born with a congenital heart defect known as Tetralogy of Fallot (TOF). This is the most common cyanotic heart defect. It consists of four defects:
1) overriding aorta
2) ventricular septal defect (hole in the bottom chamber of the heart)
3) pulmonary stenosis (narrowing of the artery/valve that takes deoxygenated blood to the lungs)
4) ventricular thickening
Now that we’ve checked off the explanation of his defect let’s get into his story.
Life is a funny thing. And not in a ha ha way. I am a registered nurse who used to work on the heart team in the operating room and then transitioned to working on a unit known as Endovascular Pre/post unit. While there I took care of STEMI patients, TAVR patients, ablation patients, cardioversions, among other procedures. I loved that job. I loved the physicians I worked with, my nursing and PCT coworkers, everyone. I loved my patients. I loved watching them come in with chest pain, getting a stent and leaving happy and better. I loved my job. My husband accepted a position on a neurosurgery team as a physician assistant in Massachusetts, so I had to leave this position. I didn’t jump right back into working when we moved, as we decided to make the transition easier on the whole family I’d stay at home for a while. Well, a year into living in our new home I became pregnant with our Atticus. He was our fourth baby, so we thought we knew how to do this like the back of our hand. I missed our genetics scan at 20 weeks and had to reschedule at 23 weeks. This took place June 10 2020. I am not the kind of person to remember dates, but this one broke me. Because COVID-19 was in full swing I was not able to have my husband attend the appointment with me. I remember looking at the ultrasound images and looking at the heart on the screen with a bad feeling. You see, I have assisted in sedating patients for TEE (fancy verbiage for a camera tube going down someone’s throat to get images of the heart). I know when blood is mixing. And I saw it happening on the screen in front of me. I panicked but kept telling myself “you’re not familiar with obstetrics. You don’t work with babies. Maybe this is normal”. After many images the technician said the physician would talk to me about everything. I went and sat in a room and a very nice doctor came in. He joked with me and sent me on my way. I breathed a sigh of relief and left. Right as I was getting to my car the phone rang. They asked me to come back to talk to the doctor. My heart sank. When I arrived they sat me in a chair and left the door cracked open. I remember this part because I felt like I wanted to run out that door. He told me they noticed our baby had TOF and that unfortunately it would require him having open heart surgery within the first 6 months of life. I couldn’t breathe. I wanted to throw up. I had to get out of that room. I thanked them and fled out of that office as fast as I could. I could feel the tears beginning to rise, a flood just waiting to consume me. I just had to make it to my car. I didn’t want to make a scene in the lobby full of strangers. I ran to my car and before I could get the keys in the door I wailed like a wounded animal. My vision blurred by a steady stream of tears running down my face. I felt sick. I felt crushed. I felt panic.
Driving home is still a blur to me. I’m honestly surprised I made it home. After a deep discussion with my husband we decided to do some research. I joined every support group I could on Facebook. I read every article on the internet. This is where the “life is funny” comes into play. You see, these TOF patients not only get a minimum of one surgery in infancy, they often need valves replaced, ablations for Arrhythmias, medications, pacemakers. All these procedures I used to prep and recover patients for, now my baby was going to be that patient.
I crawled into bed a sobbing wet mess and didn’t leave that bed for several days. I have never felt so incredibly broken in my entire life.
Adventure, food, and kids 