15 DAYS short of six years and our son, Nathanael, would have been in his second year of school. I am beyond caring about speaking too much about him. I work in a school, so I’m frequently reminded — sweetly as it happens; don’t feel sorry for me — of what he would have stood like, drawn like, played like, laughed and cried like.
October 15 is Pregnancy and Infant Loss Remembrance Day.
PALLISTER-KILLIAN SYNDROME
Of course, our boy had Pallister-Killian Syndrome so had he lived it would have been a very different life for all of us. None of this is lost on us as we continue to remember Nathanael alongside parents with PKS children of similar and older and younger ages. To be intimately involved in the Pallister-Killian Syndrome Foundation of Australia Board as secretary, I find it a privilege to be around parents of Nathanael’s brothers and sisters. Serving the Foundation and its parents is just one way Nathanael’s name will NEVER be forgotten.
A MOTHER’S IRREDEEMABLE GRIEF
Allow me a brief excursus to look at the image posted here matter-of-factly. The photograph depicts a mother absolutely wrecked by loss, literally a moment of cosmic loneliness as a soul longs for another soul ripped forever from this reality of life. Detached from the forlorn nature of such a moment, our baby’s body could not be held closer or more secure by his mother. For this moment, all that matters for the mother is the deceased life of this limp little one. All other loves are transcended as mortal grief attempts to make way for the impossibility of connection — the physical dimension with the spiritual, earth with heaven. Then there is the unabridged grief in its most graphical form; bitter and salty tears. Nothing held back. Everything given. Yet nothing can assuage it.
A BIRTH THAT GOES HORRIBLY WRONG
The following few paragraphs come
with a TRIGGER WARNING —
it may be upsetting to read.
I lay it out here for one reason —
to advocate for change.
Allow me to take you into the outrageous situation of Nathanael’s birth, and the fact he was so little cared for by the system, that he was on a Palliative Care Plan that meant he was deliberately NOT monitored throughout the induction of birth. Yes, I know, it seems barbaric.
Having considerable hypotonia (low muscle tone) it defied reason that we weren’t given the C-section we so dearly desired. When our professor clinician — a world leader in the medical science of amnioreduction procedures (of which my wife had eight in 11 weeks!) — said that Nathanael “deserves comfort and respect” we took her at her word, only to find that he had literally been asphyxiated when his head slipped from the birth canal to one side trapping his umbilical cord between his left shoulder and the birth canal, causing a cord prolapse. It doesn’t take a doctor to realise that with low hypotonia, cord prolapse is probably likely to occur. The professor said afterwards, with apparent nonchalance, “These things happen.” We wanted to say, “Comfort and respect?!”
Of course, Nathanael, did not get comfort and respect! He was further crushed by the contractions, because he died within a three-hour time range, all the while my wife’s uterus was contracting every five minutes. Add one last detail to the madness, our son’s death in utero created an instant toxic environment, instigating an immediate bacterial infection, and my wife spiked a tremendous fever and I was left to cool her forehead as staff frantically threw three intravenous antibiotics at her to contain the fever.
Within an hour an emergency C-section was ordered! My wife’s life had been put at risk because it wasn’t the hospital’s policy to give elective C-sections — as it was, my wife had the longest C-section I’ve ever encountered. A procedure that takes 10-15 minutes (I’d been in four previous C-section deliveries) took more like 45-minutes and our deceased son was further damaged in the process of getting him unwedged out of the bottom left hand corner of my wife’s uterus.
What we learned is that there are hospital procedures that treat human beings like numbers.
REMEMBERING AND REFUSING TO FORGET
It doesn’t seem right to remember Nathanael in just the wretched circumstances of his birth. We can tell you now, it wasn’t the only wretched circumstance we dealt with at the time; not by a long stretch — if only it were just the death of our son! (Despite how treasonous those last few words sound, you just wouldn’t believe what else we dealt with back then. For another time perhaps.)
Given that there is fifteen years difference between our son and his next sibling, our son who is nineteen months older than Nathanael always remembers him. He is usually very especially considerate of younger children and we think it’s because he would have just so loved to have his little brother.
Despite feeling awkward about remembering him these six years on — recognising the social forces that create silence about pregnancy and infant loss in the first place — I will continue to speak up. Not only is it what Nathanael deserves (when he didn’t get comfort and respect that he supposedly deserved), but it:
§ leaves the subject in the face of those of those who would say, “Get over it!”
§ and it also creates space for parents who have lost their babies to speak up if they wish. It validates their loss.
Thoughts that stretch to eternity of a little boy who awaits our arrival. These thoughts are sweet. They make waiting easier.
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