5PM on Friday July 18, 2014, I strolled through the door clutching flowers for my wife, and her parents’ demeanour said it all. The moment stood still. As I swung the door open it was as if the air changed. My father-in-law said, “Sarah needs you in the bedroom, Steve.” Immediately I knew something had gone horribly wrong. Seconds before I opened the front door I was mistakenly of the belief that no news was good news. Well, ‘news’ had now been received – the direst news – news you’re never prepared to receive.
You never forget moments like these. They linger, imprinted on the psyche, like the moment, the place, the situation we were in, when and where we all learned about the September 11 attacks.
We were already in worst-case-scenario land, but this diagnosis of our baby of 22-week’s gestation was as bad as it was certain. There was no escaping the reality we were plunged into. Sitting at the end of our bed, in shock, tears salting our cheeks, searching Google, hands shaking typing out searches and scrolling, trying to find out what this Pallister-Killian Syndrome was that our baby had. It was surreal. For the second time in eighteen days our world had been utterly highjacked, and those interceding days, as well as those that were to come, were an emotional and mental roller coaster ride.
We did our research even as we were rocked. We couldn’t just sit and do nothing. We were blessed at that time (within hours) to reach out to the Pallister-Killian Syndrome Foundation of Australia, and had received contact from them less than one day later. Seven days later we met the family of the Foundation’s president face-to-face. They lived in our capital city and only twenty minutes away! They treated us as family from moment one. We were in contact with the global PKS-Kids group and found the support of their community a blessing, too. We were being informed at light-speed. When all the hope you have is information you take it with gratitude! Suddenly there was a care that seemed perfectly at accord with our circumstance – parents who had experienced much of what we were facing.
But those minutes the news of our baby’s diagnosis came in we were shell-shocked. We had thought we were in the clear, which possibly made the news harder, but there isn’t a time when you’re prepared for such news; a diagnosis that renders hopeless the chances of your unborn child’s life being normal even if they were to survive.