ACT I
Bingo. Jackpot. Full house.
We were in our late thirties, and after years of trying naturally to have children, we undertook IVF treatment at the Freemason’s Hospital in Melbourne. Our IVF doctor asked us how we would feel if we had twins. I told her it would be ‘like hitting the jackpot’. Lo and behold, after only two or three short months we hit that jackpot, Mrs Y became pregnant with
twins.
The shadow
Ultrasound scans are a profound experience for most parents, so we’d heard, and they were something we were looking forward to. Our scan operators at the Freemasons Hospital were a pleasant Asian man and an acerbic Anglo Australian woman, very different people but equally competent, and the advice they gave us was the same. The first indication all was not normal was around the time of our second or third ultrasound scan. It was a small shadowy shape on the monitor screen,
a flap of skin if I recall, that indicated Twin Two might be at higher risk of Down syndrome. This turned out to be true, she does have Down syndrome, but that is the least of the story.
We thought about this news briefly. There wasn’t much to discuss, it was only an indicator so nothing was certain, and whatever the outcome, a child Down syndrome would still be our child, and we would keep her. Perhaps we’re oversensitive, but we thought we noticed a certain disapproval at this decision. I remember the acerbic scan operator being quite tactless in her remarks that the sensible treatment for Down syndrome was termination, and to be quick about it.
We thought this was a callous attitude, so we took a dislike to this woman, but she would probably regard her attitude as a virtue, doing us a favour by presenting the orthodox medical position as firmly as possible. The assumption that Down syndrome is so hideous and dreadful that the child is not worth bearing — an obnoxious assumption in my opinion — is so widespread it has virtually reached the status of an established medical fact. Indeed, I now consider this whenever phrases like ‘medical consensus’, ‘established medical fact’ and ‘weight of medical opinion’ are used. I now now that ‘the weight of medical opinion’ is something quite lightweight indeed.
ACT II
There is no hope, so just give up
…tribulation worketh patience;
And patience, experience; and experience, hope…
Romans 5:3-4
More scans followed, as they always do, and more and more measurements were made — arms, legs, heads, and one set involving a cavity inside Twin Two’s growing brain. It seems as well as Down syndrome she now had ‘hydrocephalus’
(hydro: water, cephalic: concerning the head or skull), in other words ‘water on the brain’.
(Quick explanation: the brain grows from the outside inwards, and her’s was not growing at the normal rate. It was believed it was being inhibited by fluid pressure within this cavity.)
I think our doctors deserve some benefit of the doubt here, for reasons I will discuss later. All the same, as the weeks went on, what should have a thrilling activity for us was becoming a real chore. With each ultrasound, the bleak prognosis was more entrenched — Twin Two had hydrocephalus. If she survived she would be born with serious brain damage, and the underlying commentary remained, ‘you haven’t terminated her yet, what’s the matter with you? You’re running out of time.’
Twin One was doing fine, of course, and we always had that solace, but we’d tried for so long to have children and we couldn’t pretend she wasn’t there. (you don’t just discard a child, do you? Even a very very little one.) Twin Two was always on our minds. So young and already she was falling behind in the race. In our private moments we would talk to her, ‘come on, you can make it.’
Do you have any questions?
The next scene in our little drama took place at the Royal Children’s Hospital in Melbourne. Mrs Y had an MRI of her abdomen and its precious cargo, and we went to see Miss Maixner, Neuro Surgeon, to discuss its implications.
God has blessed our age with many technological marvels, and the MRI is one of them. It is a wonderful, detailed, three dimensional scan. Unfortunately, the news was getting worse and worse. We could clearly see every detail of Twin Two’s tissues and organs, and her sister’s too, for handy comparison. Unmistakably there was a large dark cavity within her brain, and it was plain to see it was different from her sister.
Miss Maixner was professional in her manner, and she was emphatic. The hydrocephalus was severe. Twin Two might die in the womb, she might even pose a risk to Twin One, there might be complications at birth, she would be unlikely to be able to live outside the womb, and if she didn’t die at birth or soon after, her brain damage would be so severe she would be a vegetable or not far off it.
Dead or a vegetable. Did you get all that? Any questions? Do you need me to repeat any of it?
ACT III
Have mercy upon me, O Lord, for I am weak…
Psalm 6:2
O LORD, thou hast brought up my soul from the grave:
thou hast kept me alive, that I should not go down to the pit.
Psalm 30:3
Demons
We were assailed by demons: confusion, sadness and despair. We were a typical modern couple in those days. We had always had friends to enjoy good food and drink with, but had never needed to lean on anyone but each other during life’s little ups and downs. This was something completely different. Mrs Y wouldn’t be consoled. She was deeply sad and would cry for long periods, and without warning at any time, night and day.
A woman is a delicate flower, so a man must be a rock. I tried to make myself a strong place to moor on, by holding my feelings tight and hardening my heart. I told myself she’s just a shape on a screen. She’s not here yet, so she’s not real yet, so there’s no need to become attached and there’s no need to feel any loss. I told myself a lot of things, and eventually the things I told myself became more and more bizarre.
While Mrs Y was sad night and day, but for me, as I’m sure with a lot of people, the days were not so hard. The sun shone, the birds sang and there was work and other people to distract me. But late at night I would wake up alone with my thoughts
and then the devils would come and whisper spiteful things.
Raised in a culture of admirable Anglo Saxon stoicism, I know the genuine hardships people have suffered in history, and that my little concerns are trivial, but the devils flapped invisibly around me in the dark and I just couldn’t see a way through it.
I was becoming overwhelmed. Despite having triumphed over a handful of life’s petty disappointments and frustrations, I discovered I wasn’t a Neitzchian superman in my own solitary universe. This little unborn girl made me realise what a selfish, weak and wretched creature is man — this man. I had cruel and callous thoughts, and feelings of guilt in response. Once I even made an unspoken suicide pact with Twin Two so Mrs Y and Twin One could live freely. (Did I mention the thoughts I had were bizarre?)
God had already seen what was happening, of course, although we didn’t know it. He sent us reinforcements in the form of some of His many human agents — new friends carrying His word, and old friends we never truly knew before. He sent sublime communications such as only the anguished mind can perceive — a word here, a phrase there, a soft voice from deep within, a peculiar coincidence at a special moment. I began to feel, tentatively, as if there was Someone there I could turn to.
So I prayed to Him.
Inside the circle
The Devil had the measure of us by now. We were weakening, too confused by now to really understand the medical implications of what was happening, and without the spiritual awareness to see things from a higher plane. We went as far as to discuss with the obstetrician about the procedure of ‘selective termination’. She told us there was ‘some’ risk to Twin One. I pressed her, but all she would say was ‘some risk’. The word ‘some’ really made me annoyed. What a vague term to issue forth from the great edifice of Science. Don’t we live in a world where every hair on every head can be measured to within a billionth of its diametre, where the beating wings of a butterfly in Bogata can cause a tempest in a test-tube in Toronto? Hadn’t the Mind of Man has encompassed the Universe? Can’t Great Science do better than ‘some’?
It was almost as if these people were just reading things out of a book or something.
The scepticism that always kept me apart from God was off its leash. I didn’t know what was happening, or what to believe, so why should I believe anyone?
God has a special form of strength he gives to really simple sinners, who are too foolish to accept the gift of real inner strength, and it takes the form of a pig-headed, mule-like stubbornness. My circle of certainties, that once encompassed so much — science, art, philosophy — had shrunk, until all that was left in it was me, Mrs Y and our own flesh and blood. Little Twin Two might be the one who would wreck our lives, but she was inside the circle — she was our flesh and blood.
ACT IV
All things seek their own element. Beasts live in the field, birds fly in the air, and insensitive clods are drawn to the medical profession. Into our tale now lumbers Dr Hunt, Neurologist, a gentleman who somehow managed to be aloof and oafish at the same time.
Mrs Y’s expanding abdomen had for a second time undergone an MRI scan, and we went back to the Royal Children’s Hospital to see Dr Hunt and discuss it with him. It didn’t start off well. We were greeted with a remark something like, ‘who are you and what do you want’. He hadn’t discussed our situation with Miss Maixner, or even looked at the previous MRI scan. He hadn’t read the file. He hadn’t even read our names.
The scan results were there. He looked at them while we looked over his shoulder. He read the summary of the previous results, and promptly declared that the condition was unimproved. In other words, get the flower bed ready, your vegetable is coming.
I’m still angry about this unspectacular piece of doctoring. We looked at the scan together, and I think he just came to the easiest and laziest conclusion. Needless to say, I have no medical training — being a mere man and not one of society’s lofty demigods — but unlike Dr Hunt I had actually carefully scrutinised the first MRI scan. It was obvious at a glance that this scan was very different. The cavity was much smaller, and the brain area much bigger. He ought to have been in less of a hurry to stomp out our unrealistic false hopes, and should instead have instead stomped down the corridor to his colleague’s office. That would be the minimum you’d expect from a medical professional wouldn’t it?
However, there may in fact be a simpler explanation, one that presents Dr Hunt in a much better light. I will explain it later.
Scepticism
Now the scepticism that had been growing regarding these medical professionals had a focus. It was obvious what was happening. The blind were leading the blind. One of the medical brotherhood had made a pronouncement, and all others had been obligated by Club Rules to repeat it. This buffoon was the proof!
Thank you Lord! Your messages to us may take some subtle and mysterious paths, but when they arrive they are unmistakable. Our encounter with a foolish doctor had transformed our fool’s hope into real hope.
‘That guy is an idiot. I don’t care what he thinks. Let’s get out of here.’
ACT V
It was a big surprise after my daughters were born. We had stopped calling them Twin One and Twin Two of course. They both had pretty names. Twin Two came out second, all covered in blood, and cried — which was odd behaviour for one who was meant to lack the grey matter to survive.
She quickly found herself in an incubator. I went to see her, still confused, and afraid to become attached, since I didn’t know what her condition was. I remember thinking, ‘you sure do a lot of wriggling and grimacing for a vegetable.’
I’m sure an Angel was standing at my side, saying, ‘God has given you a miracle, your daughter will not die, and look — you can see she’s not a vegetable,’ but despite the evidence of my eyes I behaved like a slow witted fool. Even after she was brought back and put in a cot in the hospital nursery, it took me a long time to open my heart to her.
The truth is, for all my outward stubbornness I had tried to kill my feelings for her, and to open my heart up to her again was difficult.
During this time, Miss Maixner was diligent and professional. She was at my wife’s bedside as soon as the twins were born, and when Twin Two was whisked off to another hospital for tests and observation, she was there, checking, monitoring — and caring.
She did the right thing, although it appears her diagnosis was wrong. It appears that way. When she made her assessment, it was unequivocal, but then it was only half way through Mrs Y’s pregnancy and was based on only one MRI scan. So perhaps, although it appears she was wrong, she has some justification.
Because it appears that she was wrong.
Maybe all the doctors were all wrong all along, they were certainly surprised at our healthy little girl. It was almost funny over the first few days after she was born, all of them scratching their heads. Pleased, but perplexed.
It could be that because the vast majority of Down syndrome babies who are apprehended before birth have their lives terminated, there is no data from which to concoct theories of brain development for Downs babies.
That’s one rational conclusion.
But another possibility exists, built upon a foundation deeper and more mysterious than how things appear. The one I alluded to earlier, and it illuminates everything in a forgiving light.
Perhaps all the doctors were completely correct. Perhaps our special darling really was afflicted with a brain destroying condition, but God took pity on an old childless couple and performed a miracle for us. If so, it lets all us all off the hook, don’t you think? All of us, if you think hard about it.
Either way, at least one miracle unmistakably happened. A worldly, weak and stupid man was given the esources to love his disabled child, and was brought into the loving arms of his God and Saviour.
That is a miracle that will stay with me.
EPILOGUE
She waddles in to my office now, with a big laugh and a big grin (it’s funny to catch Daddy with the office door open). She comes for a tickle or a cuddle, or for a little talk — she doesn’t use many words herself yet, but she understands her Daddy. Sometimes she leans on my big belly and falls asleep listening to the soft classical music I love, while I type one handed.
This was not the end of the story, of course. The fact is all this silliness made me very silly for a while afterwards, and the road back to God had a few more bends to round. But that’s a story for another time.
For now, my little dramatic comedy has a happy ending. The flower beds are overgrown with grass and weeds (as they should be), and she sleeps in a real bed alongside her sister, laughs and plays with her, runs around after her.
Because she’s not a vegetable after all.
Silly Fingers 