Fallot's Tetralogy (Part 2)
Friday, April 26, 2019It was 10am. The paediatric cardiologist would only arrive at 1pm and I was asked to return at 12.30pm to wait for him.
"Because there is still some time before the appointment... Would you like to take a walk somewhere around first?" I gave another aimless nod, stood up and left the centre.
I hadn't had breakfast yet, so I made my way to the Killiney coffee shop on the first floor. I mindlessly ordered a plate of noodles for myself with a cup of teh-o. I sat down with my food and without touching it, I began my research on heart defects.
My sister was born with a heart condition and so did my cousin, hence heart defects were not new to me. Both of their defects healed up over the years as they grew up and they were left with a precautionary advice to be careful in their activity choice and not stress their heart. I've heard from my mother and my aunt that they were difficult babies to raise. The first few years were tough as hell, a shit ton of crying, sometimes medication was required and it took forever to feed and finish a bottle of milk.
As I went on with my research on heart defects, I wished hard that Nathan had ASD (atrial septal defect). A hole in the upper chambers of the heart. ASD will heal up over the years or can be repaired with a cardiac catheterization surgery (a thin, flexible tube called a catheter is put into a vein from the arm, groin (upper thigh) or neck and threaded to the heart). I braced myself for the supposed first few years of endless crying and fussing. I'll get through it, I told myself.
I wished hard that he didn't have VSD (ventricular septal defect). This type of defect usually require an open heart surgery to close up the hole and very often, the surgery occurs immediately after birth or within a few months of his young life. I couldn't bear the thought of an open heart surgery. It was tough to digest the paragraph on VSD and tears started welling up in my eyes. I finished the last mouth of noodles that I cuold stomach, grabbed my bag and headed for the nearest washroom.
I closed the cubicle door and my tears began to flow. I sobbed quietly in the toilet. Mixed emotions of worry, anxiety, helplessness, despair and denial rushed through me. "Why my baby...?"
I stayed in the cubicle for a good 15-20 minutes till my tears decided to stop defying my will. I wiped the remaining tears dry, cleaned up a little and found a seat at the lobby reception. There, I continued my research on the human heart. I wanted to use every minute I had to get every knowledge possible. I wanted to be able to understand every word that the paediatric cardiologist would be saying later on. I needed to refresh my memory on the human heart anatomy. I didn't want to be stuck in a place where I was stumped due to a lack of knowledge.
2 hours flew by so quickly. At 12pm, the husband arrived from his workplace. He flashed me a tiny smile, I could tell that he mustered all the strength he had in him to give me that tiny smile... a smile that he hoped would give me some strength. He went to grab some quick lunch, I followed along. I had no appetite, so I chose to get a simple toast from the same Killiney coffee shop. He couldn't finish his bowl of macaroni. We had too much thought and anxiety in our minds. I guess we were thinking the same foolish thing, "Please let our baby be okay".
On the dot at 12.30pm, we walked into the centre. The receptionist saw me and said, "Oh is it 12.30 already?" To her, those 2 hours might seem like any hour of the day. For us, the last two hours were heart-wrenching.
Once again, I was back on the plushed wooden chair, waiting. 1pm arrived, the doctor was nowhere to be seen. 1.30pm came, the doctor wasn't here yet. We googled the doctor's name and found his portrait. We kept a lookout for him. I tried my best to remain calm. I didn't care about how long I had to wait. I felt grateful that the doctor was taking time out today and head down to Mount E Novena just to see our case. I was willing to wait, however long it takes. I wanted answers.
It was close to 1.45pm when the doctor arrived. He was ushered into one of the ultrasound rooms and we followed in soon after. Before starting his scan he instructed us, "Let me do the scan first. After it is done, I will discuss my findings with you, ok?" We nodded.
The scanning took a long time. Unlike the previous scan, he focused only and only on the heart. Tears streamed down my eyes while he was doing the scan. I hadn't meant to cry but I couldn't hold my tears in. At that moment, I understood the severity of the situation. My baby was sick. Very sick.
The husband held my hand tight. I could tell that he was struggling to keep his tears in. Halfway through the scan, he could no longer hold the questions in. "So what's wrong with him?"
Remembering the doctor's words from before and not wanting to interrupt the scan, I shushed the husband and told him to be patient. The doctor replied in a gentle tone, "Let me finish the scan first or I'll be giving you half the story only, right?"
The husband pursed his lips as he struggled to keep his anxiety and worry in check.
A whole lot more probing, ultrasound gel and a few nods from the doctor later, he said that I could sit up. His scan was over, he had a diagnosis for us.
I moved to sit in one of the chairs within the room. The husband pulled his (chair) closer. We huddled around the paediatric cardiologist, he grabbed a pen and piece of paper.
He started by drawing a human heart. He did his best in explaining the four chambers and arteries to us. And as he explained, he started listing the problem areas that Nathan's heart had. My heart sank. I struggled to stay in tuned with reality. My baby has 4 defects in his little heart. This was a lot more than what I had braced myself for... and he had a ventricular septal defect. The defect that I wish he wouldn't have.
"These 4 defects are also known as 'Fallot's Tetralogy'." The doctor scribbled the name at the top in his illegible handwriting. "And your son's condition is of moderate severity."
Me, "Will he get better? Can the hole... the ventricular septal defect heal on his own?"
Doctor, "No. He will never get better. He will either remain the same or get worst. He will require open heart surgery, either at birth or a few months down the road and another surgery at 8-9 months of age. He will be blue at birth due to the lack of oxygen in his body. This condition is known as cyanosis, he will be a cyanotic baby."
I can barely remember the things that happened after this point. I was numb. My mind had gone blank. I was trying to keep up with the conversation. Nodding my head, asking a few questions, but nothing was really getting registered.
At some point, we ran out of questions and the doctor ran out of things to share with us. I recall leaving the room, sitting back on the chair, being told by the receptionist that my gynae would be calling me in a minute.
My phone rang and I picked the call up. It was the nurse from my gynae clinic on the other side of the phone. And then the tears came. It wouldn't stop. I struggled hard to contain my sobbing.
We scheduled for an urgent appointment with my gynae clinic for the next morning. As babies with fallot's tetralogy often come with Down's Syndrome or DiGeorge syndrome, I was asked to head down the next day for another round of bloodworks to test for those two conditions.
I had passed my triple test previously but my gynae was worried that I might have slipped into the 5-8% who received a false negative for Down's Syndrome from my triple test – after all, I had fallen into the 0.8% category of women who failed her copper IUD contraception.
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