Fallot's Tetralogy (Part 2)

It 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.

Fallot's Tetralogy (Part 1)

Fallot's tetralogy. Two words that crippled my heart. Before this, I didn't know that there were any two words other than "break up" that could tear my heart apart. Yes, it sounds silly and naive and incredibly immature. There are probably a ton of other two worded phrases that could cause a heart break as such.

I didn't know that it could possibly be this hard to have a healthy baby. I never expected it to happen to me. I am at a prime age. I passed my triple test. I gave birth to my firstborn healthy – very healthy and also feisty. I thought my second-born would be like his elder brother. Healthy, fat and well. I thought we would pass the fetal anomaly scan with flying colours. The first time I heard of the words "fetal anomaly scan" when I was pregnant with my elder son, Ethan, I freaked out. I asked if I could opt out of the scan – the word "anomaly" was frightening. Turns out it was just a name. Just the name of a scan to screen for any possible abnormalities in a foetus' organs. I was nervous throughout Ethan's scan and the wait for his results. Thankfully, Ethan passed his with flying colours. His younger brother on the other hand... not so much.

On the 26th of March, I went for my scheduled appointment at the Prenatal Diagnostic Centre in Mount Elizabeth Novena. I was a lot more chill as compared to when I went for Ethan's. I had gone through it once, I knew what it was about, I thought there was nothing to worry about. Just a scan. Nothing frightening. We'll get it all done within an hour or less, the results would be great like his elder brother's and then we will be on our way home.

The scan began. The sonographer started with the heart. It seemed okay at first. Then I realised... she was scanning a lot more than usual. Taking a lot more measurements and pictures. I took a closer look at the scan. Something didn't feel right. It looked like there was a gap where there shouldn't be. I kept quiet. I didn't say a word. She clicked a few more buttons and what seemed like a projection of the blood flow in Nathan's heart appeared, more parts blue than red. That couldn't be good. Still, I kept my mouth shut. I didn't know what to say. I didn't want to interrupt her either. Actually, I think I was more afraid of disturbing her and bursting my own fragile bubble.

Finally she moved on to scan his other body parts. I took the effort to make some small chat. She showed me his face (I think he looks a lot like me), the five fingers on each hand, his penis which seemed large and so prominent on screen (lol), his spine, his toes, his brains and more. I couldn't resist and so I asked, "How is he? Everything okay?" I think I might have croaked at the last syllable. She answered "Mmm. Let me scan more and I'll tell you later." My heart sank. I didn't have a response. I stared at the screen in front of me and clutched my hands tighter together. My hands were clammy.

Fast forward to the end of the scan. Nathan was incredibly obedient. He finished his fetal anomaly scan in approximately 20-25 minutes. He took half the time required as compared to his elder brother. Ethan was super active during his fetal anomaly scan. Constantly punching the probe, turning around, rotating, circling... showing his protest that he didn't like being probed lol. Nathan on the other hand, just a few gentle first bumps on the probe, probably out of curiosity. It was easy scanning him and the sonographer managed to capture all the required shots swiftly and every image appeared beautifully.

I guess, I should have known. That was the first warning sign. The lack of activity in my belly. I could always feel Ethan. He was strong and active, constantly moving and reminding me of his presence. Nathan was quiet... too quiet. Sometimes I could feel his jabs but they were little and infrequent. Most of the time, I relied on seeing my belly move to tell that my baby Nathan was alive and moving. He was so different from his elder brother. I should have known that something was up.

The sonographer finished the scan and told me to make payment first and go back up to see her. She said that she needed to talk to me. I was anxious and calm at the same time. Braving myself for the worst. I texted my husband while I was making payment. I told him about my worry. I wrote, "His brain, legs, lungs, and penis were very good. I know cos she say “very good”. She said his penis was very prominent, big and clear 😂."

He replied, "Heart. Is missing." My husband could tell. Something was up.

He took the rest of the day off work and came down to join me. While waiting for my husband to arrive, I headed back up to the centre to see the sonographer. She broke the news to me. "There is something wrong with your baby's heart. I called your gynae and he said that he would like the baby to be seen by a paediatric cardiologist for a more detailed scan. When would be free? Let me arrange something for you."

I was numb. I tried to gather my senses together but my mind had gone blank. I gave an aimless nod. "Take a seat. We'll get back to you shortly". My legs headed for the plushed wooden chair and I plopped myself down.

An appointment was made for later that afternoon at 1pm. The paediatric cardiologist would come down to the centre and do a fetal echocardiography for Nathan.

The News Is Out

[Written Date & Time: 8 April 2019, 01:40am]

I am just done editing the photo... The photo of the post that would announce Nathan’s demise. It was something that I had been avoiding for the past two weeks. It was so hard editing the photo. The difficulties faced weren’t technical – I couldn’t keep the tears from falling, my vision kept blurring up.

The post is scheduled to be released later on this week. I prepared the caption a long time ago, well not that long. I wrote it on the night that I found out about Nathan’s heart condition. I wrote and saved it in advance because I knew that I would have a terribly tough time thinking of a caption now, having to recount the various emotionally-wrecking instances of the past two weeks, squeeze my messed up emotions into sensible words and tapping the “post” button. I was also trying to save myself from a teensy bit of heartache — the bit that would set me off the edge again, crying to sleep.

I don’t think I have ever cried this much or continuously for these many days in a row (14 days now and counting). On day 11, my eyes were so swollen from all the crying, I looked like I was suffering from a severe case of conjunctivitis. It was also then when I realised, I have to do my best and restrain my tears... all the crying was starting to affect my vision... I've been stressing my eyes out way too much. As you can tell from the day count, I am trying – and failing.

That bear. There is a story behind it. The whole family was at Ikea, shopping for furnitures for the new house. We bought a new place because of Nathan, for Nathan. There isn’t space in our current home to accommodate his arrival so my in-law’s decided to sell away this home of 25 years, to get more space for their second grandson. Oh, the irony of it, because now we will be moving in without him. It hurts so much to say this line.

We were at Ikea, shopping for furnitures. I walked by a mountain pile of this $1.90 bear and thought to myself, “This would be a nice first toy for Nathan.” I walked towards the husband. He saw the bear and raised an eyebrow at me. I defended, “It’s for Nathan.” We bought and brought the bear home. I’m glad I bought the bear. It is something to remember Nathan by. But damn, the bear... a second irony in this mess. That embossed heart on its chest. A stone cold joke.

Two days before the procedure, the husband held the bear in his hands, and he made a request. “Can we never buy this bear again?” I understood why. This bear is Nathan’s, it belongs to Nathan, it symbolises Nathan to us and thus it would unfitting for any of our other children to play with it like its their toy.