Dear Zackary,
My precious boy, I’m writing this letter as you approach your second birthday because I want you to realise how happy you make us. You’re the strongest person I know and your fighting spirit inspires me each day. I’m not surprised though. You were a battler even before you were born.
I’d reached the end of my first trimester when your dad, Jason, now 33, and I learnt you might be different to your siblings – Patience, now eight, Kynam, seven, Briella, five, and Imali, four. ‘There’s a chance the baby could have Down syndrome,’ the doctor warned us after a series of blood tests and scans. He also offered to do an amniocentesis test, where a long needle would sample my amniotic fluid. But we refused. It’s dangerous at such an early stage and there was no way we’d risk losing you. Besides, regardless of the results, I knew we’d keep you.
‘This little one’s going to be perfect,’ your dad smiled. But as the pregnancy progressed you gave us plenty to worry about. Doctors ruled out Down syndrome and a range of other chromosomal problems, but it was clear you weren’t developing properly. Scans showed your jaw was too small and there was no cartilage in your nose. You also weren’t swallowing amniotic fluid, causing my tummy to expand even farther. At 33 weeks, I was so big I had to stay in hospital. ‘It’s likely this baby’s coming early,’ the doctor said, giving you steroid shots to prepare your underdeveloped lungs. But before you arrived, the bad news just kept coming. You hadn’t grown any ears and it wasn’t determined whether you had a trachea, the windpipe that connects your mouth to your lungs. If that was the case, you’d need an emergency tracheotomy the minute you arrived. ‘There’s a chance he won’t survive,’ the obstetrician said. But your dad and I had faith.
‘You’ll be okay,’ I whispered. Finally, at 35 weeks, doctors had determined your diagnosis. You have Treacher Collins syndrome, a genetic disorder that affects the growth and development of the head. Squeezing your dad’s hand, I sat in shock as we listened to what it could mean for your future. The condition can cause facial birth defects, such as a cleft palate and hearing loss. But there was some good news. Most people with the illness go on to lead regular and independent lives. It was so important to us that you grow up and go to school with your brothers and sisters. We researched the syndrome on the internet. I was shocked to see examples of the unusual facial structures. Many had eyes set very far apart and their jaws were underdeveloped. As tears streamed down my face, I was overcome. Would I ever get used to your unique appearance?
But I needn’t have worried. When you came into the world on July 19, 2012, you were just as beautiful as our other babies. I had you at 36 weeks but because I was under general anaesthetic, I didn’t meet you until three hours later. I’ll never forget seeing you for the first time in the intensive care unit. You were covered in wires and tubes, but I could tell you were absolutely perfect. Jason and I lay a hand on your arm, staring at you in awe. You had many signature Treacher Collins traits, with wide-set eyes and no ears, but thankfully, your abnormalities weren’t as severe as doctors first thought. The emergency surgery was no longer necessary. We were so relieved, but you weren’t entirely out of the woods. You had trouble swallowing and had to be fed through a tube. You also needed help breathing and had to lie on your stomach to ensure you didn’t choke or suffocate. But even then, you were so determined.