Saturday, February 7, 2015

Day One: Diagnosis

I remember the day before as being an exceptionally good one. It was New Year's Day 2014 and we'd spent the day with our family on both sides. Me, about 22 weeks along, stuffed into a new red dress that hugged the baby belly and left the front just a little too short. I was very happy and very proud to be bearing the first grandchild on both sides. We took a photo that day, Ivan, Blue & I with the sea monkey swimming under that red dress. Full of joy and anticipation for the year ahead, I captioned it "My Family".

Little did I know that, in the next few days of grief and uncertainty after the diagnosis, that photo would be a painful reminder of all the hopes and dreams that were dashed in a darkened ultrasound room.

We'd just been back from a family vacation in Tokyo, and my 20th week detailed scan had been postponed because of it. I'd gone for the routine ultrasound on my own at Parkway East Hospital the friday before the new year weekend.

"There we go, you can see the arms and hands.. That's the head, and the torso. Did you already know the sex?" The technician asked. I smiled and answered that I already knew I was having a little girl. "Yeah! So many girls today, you're the fourth one since this morning," she said, squeezing more warm gel on my belly. "Now we'll go look at her organs and heart."

I should have known then that something was not right when the young, chatty technician fell silent some time later as she continued the scan. But I was tired and the blurry shadows on the screen meant nothing to me. Finally, she pronounced that the scan was done and said I could go. "The doctor has to see the images, but she is on leave today. We might have to call you back again next week for another scan." "Why?" I asked. "Oh, the pictures weren't very clear today, and we might need to scan again, don't worry." There was something nervous about her smile when she said that, and I should have known.

Deep down I think I did, but I pushed aside those thoughts and reassured Ivan and my family that all was well and they just needed more pictures on Tuesday because Pipi was not cooperating.

Tuesday rolled around and I went back to the hospital where the same technician started the scan again, this time with an older female doctor studying the screen behind her. "There, you can see the four chamber heart," said the technician. "But it looks very strange." The next 20 minutes, I heard words and acronyms I'd never heard before being bandied around that dark room. I don't remember what I was thinking then, I just remember feeling very numb and my brain wasn't processing anything. Finally the doctor turned to me and said "There's something wrong with baby's heart."

My mind was an awful awful blank, and I didn't feel any emotion, but some part of my soul must have heard the doctor because I could feel hot tears slipping down my cheeks.

"It looks to be a very complex heart defect," the doctor barreled on. "We can't see properly here, we're going to have to send you to do a more detailed echo." I left the room in a daze and must have looked a wreck because as I stepped out the door into the waiting room, I could feel the stares of the other patients. The technician pointed me to the restroom. "I'm so sorry I couldn't tell you the other day, I had to wait for a doctor to confirm,"she said, looking so apologetic.

I called Ivan from the toilet. He was at work, and when he picked up, I told him between hacking sobs that they said there was something wrong with the baby's heart. I have never, ever, heard him sound more serious than in that phone call. "Stay there. I'm coming right now."

We were given an immediate appointment that afternoon at Mount Elizabeth to see a renowned pediatric cardiologist. The echocardiogram took over an hour, the doctor intermittently frowning as he peered at the screen and made notes, while Ivan stood over me, still as a statue, staring at the outlines the baby made as she wriggled. I don't know what he could see, and it took so long, I fell asleep, emotionally drained.

Later, Dr Wong, an older, wizened looking man, sketched a rudimentary heart on a piece of paper as he explained that there were four things wrong with the baby's heart.

One, she had a Ventricular Septal Defect, a very large hole between the lower two chambers of her heart.

Two, Pulmonary Stenosis meant that the artery bringing blood to her lungs was smaller than it was supposed to be.

Three, the two main arteries bringing blood in and out of the heart to the lungs and the body were switched around. Transposition of the Great Arteries meant that deoxygenated blood wouldn't go into the lungs to receive oxygen, and instead, would be shunted back to the body again, carrying blue blood. "She might be born a blue baby," he said.


"Yes, you see, even though with the VSD and stenosis, her TGA is considered complex, but in some ways, she is lucky because that hole in her heart is going to allow the blue and red blood to mix in the chambers and go back out to her body."

"Okay.. and what's the fourth defect?"

"Alone, this defect wouldn't have affected her at all. She has what's known as dextrocardia situs inversus. Her heart, as well as the rest of her organs, are flipped around, like a mirror image."

The novelty of having a Grey's Anatomy baby was lost on me then as Dr Wong went on to tell us that children born with such heart defects don't usually live very long, and in her case, the corrective action would likely be a series of very risky, very expensive open heart surgeries, spread out over a lifetime. "You'll have to consider your options carefully," he said. "You can also choose if you want to terminate the pregnancy now."

Terminate. Three syllables that punctuated what would rank up there as one of the worst days of my life. I say 'one of the worst' because the next few days that followed the diagnosis were nightmares as well, as I grappled with decisions right out of a Jodi Picoult novel. Should we terminate the pregnancy (nobody said 'abort the baby' because I guess one sounded more heinous than the other), or should we subject her to a lifetime of traumatic surgeries?

Or could we have her, and bring her home on 'comfort measures' and then let God decide when he wanted my precious baby back?

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