12 June 2008

A Grim Diagnosis

A piece of news can change your life forever.

Or perhaps, it already did the day I found out I was pregnant.

Vera's diagnosis came like bolt out of nowhere. We were on yet another visit to the ICU; it was her 12th day there. By then, I was almost getting used to her being there.

Two days ago, she had opened her sleepy eyes momentarily for Mummy and Daddy. We also heard her hiccup! She was on bililights for jaundice, her eyes were still cloudy, and her weight had dropped 300g to 1.6kg. Yet I was in relatively good spirits, knowing that babies can lose their birthweight but majority regain their it in a few weeks. Doctors had flagged us about a few abnomalities, but said that they were not yet able to piece the various signs of the puzzle together.

Upon reaching the ICU, I was surprised to see that Ian's dad and elder sis were there. Why the sudden gathering? "The doctors have some update for us" Ian said.

We were ushered into a room, like a tutorial room. I took out my trusty record book, ready to pen down what the doctors were about to say.

"Vera has Trisomy 18," they said. "This is a very serious condition. 50% live a few months. 90% do not make it past their first year. The less than 10% that do live suffer severe developmental delays. Most do not live past their teens."

The doctors went on to explain how it is caused by faulty cell division, a random act of nature. Instead of making 2 copies of the 18th chromosome, 3 copies were made in every cell in Vera's body. Hence "Tri"somy. This is the 2nd most common Trisomy after Trisomy 21, Down's Syndrome. However, you don't hear or know of it much unlike Downs, because most fetuses do not make it to birth or are stillborn.

A laundry list of the abnormalities she had was described to us. Most importantly of all was a heart defect called PDA, Patent Ductus Arteriosus, meaning "open duct". This heart vessel closes automatically when a healthy baby is born. Vera's hadn't closed. This condition leads to abnormal blood flow between the aorta and pulmonary artery, two major blood vessels surrounding the heart. As Vera's PDA was large, she was at risk of developing heart failure, bleeding in the lungs and problems with lung development.

In time to come, babies with T18 would have frequent apnea spells. This happens because the brain sends faulty messages to different bodily functions. Hence, she may "forget to breathe" and have more and more frequent "blue spells". "When you open up her blanket and don't see the rise and fall of her heart after 20 seconds, it's not a good sign," they added.

We were also told to expect very slow weight gain. "It could be months before she even regain her birthweight of 1.9kg." they said.

The doctors went on to describe how they were going to treat Vera's case. Conservative Management they call it, or 'Comfort Care'. What this means is that they will "let nature take its course". They will not perform any surgery, as it would put Vera's life at risk.

It was the worst kind of news in the world. But surprisingly, I managed to remained calm. Calm enough to ask questions and clarify what I was hearing, making sure I understood fully what was being said.

But the minute everyone left the room, I broke down in Ian's arms. Why is this happening to OUR baby? Are they saying our baby is going to DIE??? Why weren't the doctors going to do anything? Why do they have the 'lost cause, nothing else we can do' tone of voice? We hugged each other fiercely. And there and then, we made a pact that we had to be strong and face whatever comes along together, because 'two is better than one'.

It was time again for me to express milk for Vera. I watched it flow from me, drop by drop, like tears from my heart.