Despite the ridiculousness of child birth and the relentless anxiety of motherhood described in the previous post, Stick to The Plan, I was enjoying being a mom. His mom anyway. I thought of him as an easy baby. I never felt overwhelmed by him or my new role. For someone who swore off babies, I transitioned really well and I was happy. I found comfort in listening to his heart and peace in watching him sleep. Congenital heart defects wasn’t something I was worried about. I thought they could see that stuff in utero.
1 Year Well-Child Check Up
As I’m sure you know, well-child check ups are routine and are typically uneventful. But this was our first one and I was excited to get an official weight and measurement. I’ve never owned a scale so to weigh him, I use to put him in the grocery store produce scale. I was mailed a several paged, front and back survey from the pediatrician. I filled out what I knew, tested what I wasn’t sure on, skipped and stared what I could not answer. It asked social questions, motor skills, cognitive abilities, language and home life information.
The pediatrician went over the survey with me, asked me questions, I asked him questions and it was determined that Liam was definitely interesting. Although Liam’s mouth moved in the attempt to speak, he could not. It was chalked up to having ankyloglossia (tongue tied), which is something his dad has too. In fact, when Liam stuck out his tongue, it barely went out past his lips. Luckily, this somehow didn’t make nursing difficult for him. No one, including the doctor, was terribly worried about him not talking. Besides, Liam could see a written word or a physical object and translate ASL. At this age, he was doing whole sentences in sign language. Granted, I was the only damn one who could understand and I had to be his translator, but he was impressive nonetheless.
The doctor also noticed Liam’s palate is extraordinarily high, which is why he swallowed like he had peanut butter in his mouth. I mentioned a few observations about his skin, a weird throat noise, and his preferences but they couldn’t be proved to be anything significant. He still had a clogged tear duct, which he was born with and I was determined to remedy it myself (with the doctor’s direction) because surgery scared the shit out of me. After the discussion, the pediatrician popped his stethoscope in his ears and Liam laid down, holding very still (he was used to this, I’m embarrassed to admit).
I Hear Something
The pediatrician listened in a few areas across Liam’s chest. A quick few seconds here and there, and three seconds too long near his left collar bone. I couldn’t even wait for him to finish. I nudged him back and motioned for him to take the stethoscope out of his ears. “What,” I asked. Almost irritated. “I hear something,” he said. He resumed listening as I melted inside myself. I’ve listened to this little heart for damn near a year, a million times a day!
The doctor went to his computer and typed up a referral to a pediatric cardiologist at the University of Michigan. He admitted that he’s not a cardiologist and he might be hearing “noise” (normal noise) but he wanted to be sure. Apparently, it’s not uncommon to find congenital heart defects this long after birth. Some find out much later!
1st Pediatric Cardiologist Visit
After a few weeks of losing my mind, it was finally time for the cardiology appointment. Liam and I waited in our room, high above the city looking toward the connected hospital, watching a helicopter land on the roof. I remember being calmed by how oblivious he was to the situation. When the cardiologist joined us she started by saying how impressed she was that a one year not only didn’t need to be sedated for the tests, but held still for the entire hour-plus he was hooked up to things. I smiled but truth be told, I purposely scheduled the appointment during his nap time. She gave his heart a quick listen (like super quick). Then, she expressed her amazement that Liam’s pediatrician heard something at all. She went on for a while about how most pediatricians wouldn’t have even heard it or thought twice about it.
Multiple Congenital Heart Defects
She reviewed the heart echo (ultrasound) and EKG before she met with us and explained the results. The pediatrician heard what is called patent ductus arteriosis or PDA. This is a blood vessel between the aorta and the pulmonary artery that’s supposed to close after birth (it’s part of the fetus not using lungs magic). Because it remained open, oxygen-rich blood from the heart was being forced into his lungs, which is backward. Oxygen-poor blood goes to the lungs to pick up the oxygen while oxygen-rich blood takes a tour of your body. This causes shortness of breath, more energy to take breathes, and ultimately causes an enlarged heart and congestive heart failure.
She added he also has a ventricular septal defect. This is a whole between the lower ventricles, which allows oxygenated and deoxygenated blood to mix (bad news bears). After she explained the details of that, she went on to explain that Liam has a bicuspid aortic valve (rather than a tricuspid). The valve keeps blood flowing through the heart in one direction. Because the valve has two doors as opposed to 3, blood flows backward into Liam’s heart through the missing door. Despite all this scary stuff that should require surgery, such invasive heart surgeries were more dangerous to Liam than doing nothing. We scheduled another visit for the following year and we were on our way.
A Happy Birthday (kinda)
A week or so after these terrifying diagnoses, we celebrated Liam’s first birthday with a Halloween costume party. I hired a photographer so I wasn’t constantly stuck behind the camera, never appearing in a single picture. Everyone dressed up, played games and had a great time. I, on the other hand, was lost in my own head just holding tight to him.
I didn’t tell anyone about his newly discovered congenital heart defects. What was there to share? Hey! His heart is super f*cked up but we’re not gonna do anything. Thought you should know. Shit! I wish I didn’t know! For the next 2 years, I observed him and noted his behaviors more obsessively than I did before. My life and thoughts became consumed with fear and anxiety, which was only relieved by Taking Notes.