The Upside of Down (13 page)

‘Excuse me! It's not to the Professor to make the decision. Darryl said that we have made lots of thoughts about it and have understood what we decided. There's not more nothing to discuss.'

The next week the appointment summary arrives. In it the doctor recounts Aidan's current physical state, medications and future treatment plans. She concludes by writing:

‘The mother is seventeen weeks pregnant. The CVS has shown the foetus is affected. The parents have decided to keep the baby. This will be reviewed by the Professor in a week.'

Reviewed? Will we be graded and assessed? This highly trained and educated medical man, who has never personally walked a road like this, will he show us the path ahead? Will he make the right decision for us? Thinking about what happened in New Zealand, the whole thing feels ludicrous. Once again there seem to be plenty of people with a view—and a need to express it—on the most personal and heart-wrenching decision we may ever face.

Initially I feel attacked by the doctor's judgment of us, doubting myself again: maybe she's right, what do we know about these things, we're not doctors, we're no experts. But, almost simultaneously, her disapproval strengthens my determination to walk away from the judgment, unscathed. It is our life. Our child. Our damn decision.

For weeks after the decision my psychological state can be summed up simply as ‘pregnant'. Other times I'm an even greater mess.

Pregnancy concocts a complex emotional mix in many average women who are pregnant with the average healthy baby—from extraordinary peaks of ecstasy to deep troughs of inexplicable sadness. I experience all of those. Then the apprehension and self-doubt set in. Surprisingly, they don't arrive with bells and whistles, loudly yelling ‘Oh no, you have made a terrible mistake.' No, the doubts are much more subtle than that. They creep in, unannounced, usually piggybacking off some friend's innocuous enquiry or comment.

‘Aidan is just so well, it's fantastic. I'm sure your new baby will be also,' an acquaintance says to me one day when the issue of my pregnancy arises.

Rather than revelling in the assurance of this statement, my mind runs the other direction. ‘What if this baby is actually a lot sicker than Aidan?' I ask myself. ‘How will we cope then?'

It's true that the differences in outcomes for people with CF are enormous, some becoming very ill in childhood with others living relatively healthy and active lives for decades. And no one is quite sure why those differences exist—or how to predict them. So, this is a reasonable concern. Unfortunately I can't contain my worry to these issues. If left to its own devices, my mind begins to creep into dark, impenetrable regions, scavenging up highly unlikely and bleak scenarios.

I drift into ranting complaints to God with my prayers bouncing between gratitude and fury. Usually it begins with something along the lines of:

Thank you for this powerful life in me, this new person in our lives. Help us to handle this, give us the strength we need
…

But within five minutes it has shifted to:

But, shit, could you not have organised this baby's genes slightly differently? Being God and all, couldn't you have managed this one little thing?

It's going to be a very long pregnancy.

***

Being pregnant in France, Land of the Svelte, puts an enormous strain on even the sturdiest self-image. Most French women are about the size of my leg, though much more elegant. In fact, from young to old, slender elegance oozes from them, like so many Catherine Deneuves.

At six-foot-two, I am already living in the land of the Lilliputians here. Pregnant, I'll be the whale among the minnows. It will be not only futile but embarrassing to attempt to keep up with these women on their home turf—fashion and figure. I recite ‘big is good, big is fine for a pregnant woman', and cling to the mantra like it is scripture.

My obstetrician's office is located in an urbane Parisian arrondissement, in a building fit for a prince not a medical practice. The waiting room is furnished exquisitely with nineteenth-century antiques; heavy, brocaded curtains and worryingly delicate Louis XV-era chairs. As my pregnancy progresses and I pack on the kilos, I grow more fearful of breaking one of these expensive seats.

‘Madame Biggar?'

I look up from the
Vogue
magazine to see a man in his sixties, meticulously manicured and handsome. He's wearing an immaculate, pinstriped three-piece suit which instantly strikes me as unsuitable for the practicalities of obstetrics and gynaecology.

‘
Oui. Bonjour,
' I say, shaking his hand and following him into his office.

In contrast to the traditional waiting room furnishings, his desk is one enormous piece of clear glass, like something out of an investment banker's office. I remind myself he's helping me have a healthy baby, not a healthy portfolio.

We begin the usual first appointment interrogation. He's a gentle prodder, rather aloof but not hurried. As I respond he pauses to make detailed notes, careful to catch each reply. My French is still infantile but I have memorised a collection of pregnancy-related words and am now overconfident about my ability to communicate.

The doctor asks all the standard questions about age, medical problems and previous pregnancies. Eventually he comes to the issue of the baby's health. I cringe as he mentions it—
mucovisidose
—preparing for his harsh words or disparaging glance.

‘That is a heavy load you will bear,
Madame
,' he says gently.

‘Yes, I know.'

‘I'm sure you'll be fine. At least you'll be prepared. When we do the ultrasounds we will look very closely at the bowel to make sure the baby doesn't have meconium ileus developing.' About 20 per cent of babies with CF are born with this complication involving the intestines becoming blocked by thick meconium; surgery is often required soon after birth. He continues. ‘Hopefully that won't occur. But for now we'll focus on keeping this baby fine during your pregnancy.'

The anxiety slips away as I realise this is all the doctor's going to say about our decision to continue with the pregnancy. He smiles briefly and then lobs out a question which includes an unfamiliar French word.

‘Excuse me?'

He repeats the question. I still can't place the word, but try to suppress my growing alarm.

‘
Je ne comprends pas
.' I don't understand.

He gives me a look bordering on pity and repeats himself very slowly.

I strain and concentrate to pull this word ‘
pipi
' from my memory, but nothing comes. I shake my head apologetically. There's a long silence while he stares at me helplessly, at a loss to explain the mystery word to an ignorant American. Finally, he rises and gestures for me to follow him down the hall. He opens a door at the end of the corridor and points inside to the toilet.

‘
Avez-vous besoin de faire pipi?
' Do I need to go to the toilet? Oh, I am such an idiot! But does a sophisticated man like this really call it
pipi
(pronounced pee-pee)? It's like discovering that the Prime Minister says wee-wee.

The appointment, now agonisingly long, moves on. The doctor asks me to undress. I look around for the changing room and only then notice an examination table a few feet behind my chair. Apparently this is the changing room. No screen or cover-up sheet. I conjure up confident pregnant body images—Demi Moore on the cover of
Vanity Fair
—as I begin to undress.

***

One day I return home from French lessons to find our babysitter on the couch in the living room, a sleeping Aidan stretched across her lap and a look of terror on her face.

‘Catherine, what's the matter?'

‘I'm really, really sorry but Aidan has had an accident,' she answers, her voice wobbling. I drop my bag and run over to the couch, suddenly panicked that he's not just sleeping.

‘Oh my God, what happened? Is he unconscious?'

‘No, no, he's just sleeping. He cried for a while and then fell asleep. I thought about taking him to the hospital, but I called Darryl and he suggested I wait until you got home because I knew you wouldn't be far off.'

‘Okay, that's fine, but what happened?'

At that point Aidan begins to stir and as he drags himself to a sitting position I can see a large gash running from the bottom of his lip and zigzagging down towards his chin; it's not bleeding, but hangs open in an unnatural, stomach-turning way.

Transferring Aidan delicately to my lap, Catherine begins to explain.

‘We were just coming back in from the park and were in the lobby of your building when Aidan started climbing on that metal artwork.' Our apartment complex has a very large and striking steel structure in the corner of the lobby which looks like a sloping mountain range. ‘Anyway, he slipped and must have slit his lip on it.'

‘Okay, I had better take him to the hospital and get it stitched up.'

Catherine offers to accompany me and within fifteen minutes we're outside of our local hospital. Once through the waiting room Aidan and I are ushered into a treatment room; Catherine is told to wait outside. Several minutes later two young doctors enter the room.

‘Hello, I'm Susan, Aidan's mother,' I say in French, extending my hand to the first of the pair.

Passing a brief glance in my direction, he gives an almost undetectable nod of his head and continues past me to the basin to wash his hands. The second doctor says ‘
bonjour
' before heading straight past me to Aidan, who's seated on the edge of the bed, legs hanging limply off the edge. She carefully examines his cut before having a rapid—and incomprehensible—exchange with her colleague.

Turning to me, ‘This must be sewn up. The cut is a manageable size so we don't think it will be worth the time and difficulty of giving him a local anaesthetic. We will just stitch it quickly.'

‘That sounds terrible. Is that really the best way?'

‘Yes,
Madame Biggar
, we are sure it is. If he gets upset by the anaesthetic shot he will not hold still for us to put in the stitches later.'

‘I'm sorry, but I can't imagine he'll hold still while you sew up his chin without numbing the area first.' Throughout my conversation with the one doctor, the other one and the two nurses have been busily preparing the equipment. She takes a quick look at them then turns back to me. ‘You must leave now.'

‘What do you mean?' I ask, incredulous.

‘We cannot do the procedure with you here. I'm sorry,' guiding me towards the door. ‘It won't take long and then you may return.'

‘No, I won't leave. I can't leave him,' stopping at the door.

‘There is no choice,
Madame
, it is our policy. This is how it is done in France. Now, for Aye-don's sake please leave.'

With that, she opens the door and with a firm hand on my lower back, scoots me out of the room to the hall where Catherine is already waiting. By now Aidan's panicked murmurs have turned to bellowing. Leaning against the wall I slowly lower myself to my haunches, dropping my head with my pregnant belly huge between them as the tears stream out. I am crying for him, for his fear and pain; for me, for my weakness and inability to protect him; and for my anger at a medical system whose policies seem to find the emotional needs of patients and families irrelevant.

Fifteen minutes later Catherine and I are allowed back into the room. The doctors slip swiftly out the door as I move across to Aidan. Initially, he is completely inconsolable. But then one of the nurses kindly approaches him with a cartoon bandage for his chin.

‘Would you like this special Band-Aid, Aye-don?' He nods his head enthusiastically, smiles at me and life is good again.

***

My monthly low-modesty obstetric appointments prove to be excellent preparation for the birth. On the day it all begins with the waters breaking in our building's elevator, I'm left stark naked on an examination table at the hospital, unnoticed as the medical team hurries around me preparing for the birth. In contrast to my pregnancy with Aidan, my bump is vast this time, with a mountain of baby bulging forth. Despite this, I'm largely unfazed by the total loss of modesty. But poor Darryl is shuffling his feet and glancing around uncomfortably as though searching for a spare tablecloth to toss over my massif of exposed flesh.

When the doctor decides that I'll need a Caesarean—because the baby's exiting face-first—an anaesthetist is called. According to two of the nurses and my midwife, this is not just any ordinary anaesthetist: he is drop-dead gorgeous. The strengths of his physical attributes, and which of the other staff may have access to them, are tossed about the room by the staff in a Parisian rendition of
Grey's Anatomy
.

Soon the young, tanned god saunters in, receiving a unified clucking of approval from the women. He nods to the nurses and midwife, a brief acknowledgement to his fan base, then approaches the side of my bed. Even from my in-labour-with-husband-present perspective I can appreciate that he's startlingly attractive. And, astonishingly, he's shirtless, wearing only the bottom half of his scrubs. The incongruity between his sculpted chest and my shuddering stomach and varicose veins is painfully obvious, and too much for my American modesty. I finally demand a sheet.

Once the god has finished dressing and the women have recovered, I'm wheeled down to the operating room where once again things are not what we expect.

I am laid-out on a cross-shaped operating table, arms outstretched. Though initially somewhat confronting, I'm delighted when nurses fit a billowing cloth tube over my arms and chest and pump warm air through it. ‘Why?'

‘To keep you comfortable,
Madame
, because it's cold in theatre.'

Darryl sits above my head, nervously brushing hair out of my face, eyes firmly fixed on the top end of the table. A small curtain is hung just north of my breasts, presumably to protect us from the unfolding scene below. Though after a soothing squirt of morphine they could take the baby out of my ear and I wouldn't protest.