Wednesday, June 24, 2015

Real Experiences Series – “Your Baby Has a Chromosomal Abnormality”

HOW do you possibly prepare for a moment that will, by its very nature, blindside you? You can’t. It will sweep you off your feet and away with the torrent you are taken. Such is a life, that will, for that season, be.
We waited on a call from a specialist medical team regarding the results from my wife’s amniocentesis — ordered because our 19-week ultrasound scan (images in the picture above) had identified life-threatening internal organ issues in our foetus. We had been building up to bad news for two weeks — and eighteen days and counting since the scan — yet nothing could have prepared us for what we were about to learn about our baby.
Sarah took the call. Fortunately, her parents were there as I was out running errands (including, getting her flowers). I opened the door and knew immediately something was wrong. Sarah ushered me into the bedroom and her parents took our son into the living room. Hardly a word was said…
We will never forget it. We sat there, about 5pm, at the end of our bed, simply stunned — feeling, yet feeling nothing at all; numb. Like, what just hit us? Moments like this you cannot shake a mind that will not let go of the new information — not for days! We were abhorrently sad, yet totally vulnerable in the midst of a mystery.
Our baby was diagnosed with Pallister-Killian Syndrome (PKS), an incredibly rare twelfth chromosomal condition affecting only a few hundred people in the world. Our baby’s case was complicated by very dire internal organ issues, not uncommon in PKS children. And PKS, it needs to be recognised, is generally a much worse condition than, say, Down Syndrome. Most people with PKS never walk or talk, and many are profoundly intellectually disabled. (Our baby would ultimately be stillborn.)
So our hopes suffered an interminable death that very moment. The more we researched PKS, the more our hopes plummeted. Our only practical solace at the time was support from the PKS community locally and globally.
We learned in our pain that very little can be done other than to be patient in the midst of moments that cannot be reconciled.
We learned that there is more sense in simply hugging and crying than in getting angry and even more confused.
We really did learn to be gentle with ourselves, and to be there for each other.
The main beauty of grief is we are able to experience what may only be accepted.
Acceptance of our grief forces us to grow in our acceptance of reality and life.
© 2015 Steve Wickham.

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