The weekend of waiting. I felt on edge, disconnected from the world, hyper-aware of the unwell baby inside me who was also dealing with this crisis in a much more direct way. To distract ourselves, Michael and I went to an outdoor jazz festival. Sat in the grass, tapped our fingers to the rhythms. Pretended we were just a normal young couple expecting our first baby together.

Did we talk? Did we cry? Did we share how scared we were? Maybe you are hoping I will say yes and tell you how this crisis brought us together. But no. We endured the crushing wait in silence, at times each wondering what the other did to cause this. At the very least: I knew for sure it wasn’t me, and Michael knew for sure it wasn’t him.

What were we to do if the tests came back positive? What was our plan?

I don’t know. We didn’t talk about it.

_____________

Four days later we got the call. All preliminary results were negative.

Only momentary relief, reprieve from the fear of Door Number Two. No time for celebrations.

We must go.
_____________

I was lying on a bed in the Case Room, which was used for these kinds of less-invasive procedures. The whole thing was going to be relatively quick – maybe an hour? – and I wasn’t going to be under a general anaesthetic. Better I stay awake, regulate my breathing, tune in to the baby.

The ultrasound machine was directly in front of me so I could watch. I was coached to prepare for discomfort – they could freeze the skin on my belly but there was no way to numb the inside. I would feel the insertion of the long straw-like tube through my muscle wall and through my uterus. I would need to breathe, avoid movement, not distract. Then I would possibly feel the baby move in alarm as the shunt entered its tiny, fragile body. It would be my job to send it calming vibes.

No matter about all these doctors and their equipment: It was all up to me. I held the focus but barely breathed.

I watched the ultrasound monitor closely, along with everyone else. Dr. Ryan was joined by another physician, Dr. Windrim, who was going to ‘drive’. Dr. Windrim would insert the shunt and drain the fluid while Dr. Ryan guided the ultrasound angles. It was a bit like working with chopsticks, and only seeing what you’re doing in a mirror. How would they overcome the inevitable disconnect between hand and eye?

Days earlier, a conversation with Dr. Ryan:

“We will insert the shunt anywhere we can get access, but we have to be careful. Or we might nick the mum.”

His Irish accent was never in the way but this time, I didn’t understand. I thought I misheard.

“You might what?”

“Nick the mum. Cut something we shouldn’t. This sort of thing is risky. A mum could die.”

Oh. Whatever. Just save my son.

_________________

I watched as the straw went in, disassociating what I felt with what was on the screen. I felt the painful discomfort of the poke, the sliding, and look there! On the monitor! There’s the baby, lying innocently at the bottom. And there’s the bright white, hard line of the straw pushed down through the layers towards it. Like a nuclear missile launched towards an unsuspecting target.

Calm voices, steady hands – a perfect dance of skill, technology, experience.

I watched the straw at first jab and then penetrate. Owen jumped, recoiled. Straw pauses, thrusts. Doctors confer. Agreed? Withdraw. Slowly now!

The pigtail shunt was in.

Sometime during the procedure, fluid was drained and collected for testing. Fluid from my amniotic sac plus fluid from his chest cavity. My belly visibly deflated, became softer again, felt more natural.

The hole in my belly was barely visible. Someone asked if I wanted a Band-Aid.

_________________

But it wasn’t over. Not nearly.

Fluid would continue to accumulate at a rate faster than the pigtail shunt could channel it out of Owen’s body. It was there to provide a tunnel, a gateway, through which the excess fluid could escape. There would be relief from pressure but that didn’t mean there wouldn’t eventually be too much volume again. It was possible we would need to repeat the procedure.

And now that Owen had a foreign object lodged in his chest, we both required monitoring. Which meant daily ultrasounds, sometimes twice daily.

I was focused on staying calm, not walking too fast, getting lots of rest. I felt huge and the heat of summer didn’t help. My ankles and calves had become swollen and spongy. My uniform was a tank top under a pair of oversized bib overalls. I waddled around our neighbourhood in sensible sandals, acquired on a recent trip to Amsterdam. I was pleased with my own foresight as I slid those sandals on every day, occasionally opening them up just one more notch.

The shunt procedure was repeated a couple of weeks later, resulting in a total of three shunts inserted into Owen – two in his chest and one in his abdomen. And on a third occasion, Owen and I were relieved of accumulated fluid. I felt like a water balloon being filled and emptied over and over again.

The ultrasounds were confirmation of what I could feel brewing hours before. The skin across my belly and lower back would stretch taut and I had terrible heartburn – the baby and fluid were putting too much pressure on my stomach and interfering with digestion. Each time we had a procedure, I knew it was coming.

I had developed a heightened awareness of my baby, my own body. I slowed way down, stopping frequently to listen. Feel. Soothe. I can keep this up for ten more weeks, I thought, when my baby reaches full-term and all will be well. How we will look back upon this time and be grateful we made it through!

I was so focused on keeping the baby inside I didn’t once think about what would happen if the baby came out.

[Images taken in Kilbear Provincial Park, June 2010]

The next few hours at the hospital were a haze of countless ultrasounds and a parade of physicians and in the end, the diagnosis was right. The doctors were impressed with the radiologist’s best guess. Indeed, Owen had hydrops fetalis – an accumulation of fluid in his chest, abdomen and various other parts, which was symptomatic of a number of conditions and illnesses. The cause of Owen’s hydrops would remain a mystery for the rest of his life.

This was all clearly a fascinating thing. Some of the doctors were not called in for their opinions, but rather to see this rare and interesting anomaly. I didn’t mind that we’d become celebrities; I gleaned much from their candid conversations with each other. But of course I learned much more when Dr. Ryan sat us down to have The Talk.

He didn’t pull any punches. Our baby was in grave danger. If left unattended, he (It’s a he! We had convinced ourselves our baby was a girl) would likely die in utero, or put my body under such stress that I would go into premature labour.

Owen was filling with fluid. This was no standard-issue edema. Rather, his abdomen and chest cavities were blowing up like balloons. In place of air, amniotic fluid. To send home the message, we were shown the ultrasound pictures of Owen floating in a vast ocean of fluid. His organs, in turn, floating in his body like planets in outer space. I Googled it later to find horrific images of inflicted babies, looking like Michelin Men.

His scrotum was swollen round and taut, his tiny testicles lost in the expanse of the sac. The link between the torso and the scrotum had not yet sealed itself (premature boys often require inguinal hernia repair about a year after they are born) so the fluid was free to travel wherever there was easy passage. He looked like an alien – short stubby arms, tiny dangling legs spread apart by a weirdly enlarged scrotum sac, huge head, round belly.

And I thought he was beautiful. Which is a good thing: Owen looked this way for many years to come. My adoration never waned.

Dr. Ryan did his best to convey the severity of the situation. The fluid was not processing in and out of the fetus as it should. Owen was filling with fluid, and so was I. Both of us were reaching capacity and bad things would happen if we did not intervene and get the fluid out.

I wondered: maybe it’s not so bad for me to go into labour. Get Owen out where we can treat him. I was dispelled of this notion quickly: not only do babies need to stay in the womb as long as possible for their own reasons, but my going into labour now was risky to my own health. Owen was so big that at 28 weeks he had exceeded the size of a full-term baby – perhaps not in height but certainly in girth. If I were to try to deliver him vaginally, he might get stuck. Really stuck. If you dare to imagine that, you can imagine how things could get ugly.

The only answer was to drain the fluid from both of us, and place a valve in Owen to continue the drainage – using ultrasound as a guide, a ‘pigtail shunt’ would be inserted into his body.

“But, how will you get it in?” I was genuinely curious and not a little horrified.

The answer was distressing: straight in through the outside of my belly. A long, sharp-ended straw would be inserted through my skin, through the muscle wall and through the lining of the uterus, eventually making its way to sit just outside of Owen’s chest. Internal pressure would force some of the fluid out through the straw. The shunt, usually coiled (like a pig’s tail) but pliable enough to be straightened, would be guided down through the tube and out the other end, eventually puncturing Owen’s body and resting with one end inside the fluid-filled cavity of his chest and the other end open to the amniotic sac, outside of Owen’s body. In other words, half in half out. At which point the outer straw would be withdrawn, leaving the shunt inside, re-coiled and secure.

I don’t remember reacting. I think I sat there, poised and collected, mind swirling with the images of what I thought this would all look like, staring down the inevitable path I knew I must take.

Okay. I’m ready. “Let’s do it.”

Dr. Ryan looked at me. “Well, there’s one more thing…”

__________________________________________

The accumulation of extra fluid throughout Owen’s whole body meant that the visual symptoms of other underlying syndromes or challenges were obscured. Typical prenatal testing at this point would have included chromosome testing that would reveal conditions such as Down Syndrome, or other development anomalies like spina bifida. I had opted to not have any prenatal testing done to this point, so none of these had been ruled out or in. One indication of Down Syndrome in particular is excess fat at the back of the neck. Owen’s shape was so distorted there was no real way to take good measurements.

We were encouraged to consider chromosome testing before intervening. Postpone treatment of my dying baby so that we could first determine if there was something else wrong with him. Was this for medical reasons? Perhaps if he did indeed have Down Syndrome, more would be known about, say, his heart, so treatment would be more predictive and suited to his needs. Or was this suggested because the results would determine if intervention would be ‘worth it’? Do we save an already disabled baby? No one said it, but was this the real underlying question?

Is it even fair to dissect this moment, to look back and judge? Wasn’t it reasonable to want to know all the facts, using all the tests at our disposal, before moving forward?

Fuck. What do we do?

“And so… What would you and your husband like to do?”

I guess we were all wondering.

I was reminded that this was the front end of a long weekend. Any samples would need to be sent away now, before the labs closed. Preliminary results would be ready as early as next week. Michael and I talked amongst ourselves: There are good reasons to wait. We’ve made it this far we can last three more days. Would be bad if something happened on the weekend. Best to know all knowable facts. Reasonable enough, yes?

I spoke first. “We’ll test. Test, get the results and then decide.”

Yes, test and then decide. But wait a second… decide what? My brain was already full but I had to squeeze in a bit more:

“So, what if we decide next week to abort? Or what if he doesn’t survive the procedure?”

A caesarian section perhaps? And how does one abort a third-trimester baby anyway?

You would have to know me well to know that I wasn’t entertaining these thoughts to make myself miserable, or to know I wasn’t actually considering these options. I just had to know all possible scenarios.

“Ontario doesn’t allow third-trimester abortions. But there is a clinic in the US. It will cost $10,000 but they would do it right away.”

My stomach stirred. For the first time in my pregnancy I felt nauseous.

“And if the baby dies during the procedure, we would induce labour.”

“Labour? You don’t just, you know, take it out?”

“No. We would give you medication and after a few days, you would deliver the body.”

Nausea turned to dizziness.

“The baby would be dead and I would carry it until I expel it?”

“Yes.”

“And if I don’t get an abortion and we choose to not intervene…?”

“The baby will not likely survive its condition. In which case we will induce and you will deliver the body. If it does survive, the baby will continue to get bigger as it accumulates more fluid, and your body will naturally think it’s time to deliver and it’s unlikely there’s enough room for it to come out. It could be a crisis for both of you.”

_____________________________________

None of it was comprehensible.

There were no good options.

I don’t honestly know why,

but in that room, in that space and time,

we decided to test, and wait.
_____________________________________

I came out to the reception area and now everything looked different. It was quite disorienting. When I had entered the room the first time, everything was fine. And now everything was not fine and I had no idea why. And at the same time, nothing had actually changed. I tried to remind myself that the only thing that was different was exposure – information about something or other that was happening anyway, whether I knew about it or not. Whether I liked it or not. This was an earnest but failed tactic – I am sure I looked panicked and wild-eyed to the other patients. Still there was no available seat so I stood in a back corner, waiting for the promised report.

About ten minutes later, the receptionist summoned me over and handed me an envelope. It was letter-sized, dark yellow. Sealed. She said quietly, “Give this to your doctor.”

I stood there staring at it, holding it in my hand. It didn’t occur to me to rip it open – after all, it wasn’t addressed to me. Instead, I decided to phone my midwife. The clinic was remarkably unhelpful in giving me direction or guidance and I thought perhaps Sarilyn would know what to do next. If nothing else, I had this envelope to give her.

I opened my phone to see that the battery had died. Now what?

The clinic was exceptionally busy and there were many women and couples, sitting and standing around. Perhaps borrow a phone? I searched the faces and no one made eye contact with me, although I know I was conspicuous and had been closely observed when I came out from my ultrasound. Not because it was me specifically, but because it’s what one does in a situation like that. On one hand, there’s a feeling of community and affinity. So many pregnant women! They all know what I’m going through! On the other hand, a bitchy wariness. Do I look like that? I don’t look like that. She’s really heavy. She looks tired. I hope I don’t look like that.

So no, borrowing a phone was not going to happen.

The only other possible phone was the receptionist’s, which was of course in active use and located rather inconveniently (for me) under the top overhang of the façade of the desk. No matter – I must speak with Sarilyn. I asked to use the phone.

The phone cord was quite short and I had to really reach to get the receiver to my ear and still talk into the mouthpiece. The curly cord was stretched so taut I felt like I was dangling from it. As I stood on tiptoes, trying to not fall over and sweep everything off the desk, my half of the conversation was heard by all.

The phone barely rang; Sarilyn answered immediately.

She suggested I come back to her office to discuss what was happening. She wasn’t sure how she was going to advise me yet but we would need to meet, review the report, make decisions. Again with the word: decisions. What decisions, I wondered? I truly had no idea what she was talking about, and said so. Decisions about what? Whatever she said, it would be okay. All of my esoteric ‘new-momma’ rules had flown out the window at that point. I would take any medications, endure any radiation, drink any potions. Whatever I needed to do to make this right.

Sarilyn clarified: Decide whether or not to terminate the pregnancy.

Terminate? I was 7 months pregnant.

I hung up the phone, in shock and hyper-alert. Okay, what next – get the car, call Michael, go to Sarilyn’s. I’ll fetch Michael on the way. Wait, where’s the car? Parking garage! I have no money. I need a bank machine. Visibility was poor as I tried to sort things out through a wall of tears. Down the ramp, pay, navigate traffic, get home – thankfully a straight drive across Gerrard to Leslieville.

But not before I finally opened that damn envelope. It contained a single piece of paper – a form that had the familiar scrawled handwriting of a harried doctor in a busy clinic.

“Hydrops fetalis. Prognosis guarded.”

Michael was waiting for me when I arrived home. He worked from home most days. ‘Waiting for me’ meant he was downstairs, alarmed and concerned. Did I call him or did Sarilyn? Probably Sarilyn because my phone was dead.

In the meantime, Sarilyn had done her homework. She knew this hydrops, whatever it was, was outside the scope of what she was contracted to do: deliver a healthy baby to a healthy mother. Instead of meeting at the midwives’ office, we would meet at the High Risk Pregnancy Clinic at Mount Sinai Hospital. I knew nothing of the facility or the clinic. Sarilyn, through experience or instinct, knew it was the right place and had made only the one phone call.

This decision to take us to Mount Sinai saved Owen’s life. Sarilyn couldn’t help him but she knew who could, if anyone.

(1998) I drove from Sarilyn’s office in the east end to the ultrasound clinic downtown. I didn’t mind terribly. This felt important – I was looking after myself – and also meant I was excused from work for the next couple of hours. I circled the block a few times looking for parking and decided in the end to park in the public garage – something I never do because of a personal principle whose origins I have long since forgotten.

The clinic has its own store-front space in an office building across from a well-known hospital that specializes in women’s health. The waiting room felt like a holding pen for a ‘Pregnant Woman, Frazzled’ casting call. No seats. I checked in with the receptionist then stood in the corner waiting for my name to be called.

I don’t remember feeling anxious. I remember feeling mildly excited – I was going to see my baby! I knew that giving up testing would mean not having an ultrasound picture on the fridge and not knowing the sex of the baby. A bit disappointing but I was ready to take one for the team. Now, ordered to do so, I was going to have an ultrasound for Serious Medical Purposes and a happy side effect would be that I could take a peek.

I was surprised when I was called right away. I didn’t wait long at all. I suppose Sarilyn impressed upon them that I was an emergency case although I am quite sure I didn’t look like one yet. And I certainly didn’t know it.

I laid on the table dutifully as the soft-spoken technician did the scan. The cold gel felt smooth and weird as she guided the roller across my belly. It was painful – she pressed, rolled and jammed the wand into whatever softer pockets she could find around the sides of my belly. I noticed she was repeating certain spots over and over again.

I was surprised to hear her voice because I know she wasn’t talking to me. She was in fact speaking to the ultrasound machine – she was recording video to review later with the radiologist, muttering things into the microphone. Measurements, anatomical bits, findings, interesting things of note.

As I lay there I was also talking – silently, to myself. Wondering if I ought to ask her what the hell was going on or if I should just lie there and wait until she’s done. Don’t want to interrupt. She probably won’t share anything with me anyway. I tried to look at the monitor during the ultrasound process but between the poor angles, bad lighting and the technician subtly edging the tilt of the monitor away from me, I couldn’t make out what was going. Not that full visibility would have meant much to me anyway.

She abruptly got up after many minutes and fetched the radiologist (another woman), who barely said hello and made a beeline for the monitor to watch the recorded film. She leaned into the screen closely, face glowing from the radiating light, eyes tight with concentration, her glasses pushed up onto the top of her head. The technician hovered behind her and stooped in, pointing to this and that while the radiologist nodded. Finally after an excruciating many minutes (2 felt like 100), they both stood up – the technician slunk back towards the drawn curtain behind her and the radiologist straightened her back, looking at me with a steady gaze.

In hindsight, I think this was the moment. This was the moment I knew life was about to change and I barely had time to brace myself. I was eager – desperate – for her to speak to me but also didn’t want what might be coming.

“Who is your doctor?”

“I don’t have a doctor. I have a midwife.”

Pause. “You will need to talk to her. I will write the report and then you will need to go see her. You will have some decisions to make.”

Silence.

I wanted to ask more, demand what was going on, insist on knowing it all right then and there. But it was awkward. I was still lying on the table with my belly exposed, the baby pressing on my bladder and my skin wet and cold from the gel. I struggled to get up – much like an elephant, I had to do it in stages. Instead of front leg, front leg, back leg, back leg, it was roll on side, press with hands, one leg swings down, other leg down, reorient from dizziness. It took a little effort.

By the time I was upright both women were gone.

(1998) I can’t remember the first midwife’s name. Might have been Andrea. The Midwife Collective model meant that I had a main midwife and then a back-up midwife – I would see one person consistently and then at some point further in the pregnancy get acquainted with another. Of course midwives have more than one client at a time and are always on call; this system was to help ensure the baby would be delivered by someone familiar to the mother.

My last appointment with the Collective (although I didn’t know it was to be my last) was with Sarilyn. She was filling in for someone else, who I think was to be my secondary midwife. So the back-fill was replacing the back-up. Sarilyn was old-school – a funky grandma who had been delivering babies for a while. Kind and thorough, if a bit disorganized.

I was expecting the usual stuff – urine sample, weigh and measure, chit chat. I was 28 weeks pregnant and had been following along with the What to Expect When You’re Expecting Book like I was reading daily Bible quotes (not that I ever did read daily Bible quotes – more that I was religious in looking up where I was at in any given week). I also knew that this time of the pregnancy, 28 weeks, was a bit of a dead zone in the check-ups. Hold the course, keep steady with activities, yes you can eat what you want…. No preparations yet, no birth ritual discussions. I felt I knew what was what and was expecting, well, nothing.

In the back of my mind I wondered about some tension throughout my abdomen I’d been feeling. My belly had become barrel-like – not a low-down rounded bump most women have at this point, but a high-up thickness that didn’t vary from top to bottom. My whole torso felt very tight and sore. My skin was stretching uncomfortably and I found it difficult to breathe, especially when sitting down. My symptoms didn’t seem unusual – any number of indignities can be experienced at this stage and it’s not unreasonable to think I was just getting a bum deal.

I mentioned to Sarilyn that everything was more or less fine – I was getting sleep, eating okay, feeling energetic – just one little thing was bugging me and it was that I felt really pregnant. We laughed and moved on to the physical exam.

Part of the pregnancy assessment is to measure the belly. To compare against average growth (number of inches roughly equals number of weeks gestation), and to compare against the previous month’s measurement. Given both of these sets of numbers, at 28 weeks I should have measured 28-30 inches.

44 inches. Sarilyn put down the measuring tape and said the number out loud. We looked at each other.

I thought to myself, “Well, that explains why I’m so uncomfortable.”

Sarilyn (probably) thought to herself, “Oh shit.”

_____________________________________________________

Twins or diabetes. These were the ‘good’ options – one was good because it was a normal anomaly, and the other because it was a known and treatable condition. There were other reasons you might be so large, Sarilyn said, but let’s not talk about those unless we have to.

I could hear the uncertainty in her voice – part fear, part lack of medical experience with such things. I understood that if it was not twins or diabetes, things might be very, very bad.

My decision all along had been to not ‘medicalize’ my pregnancy. I had opted out of any prenatal testing and ultrasounds – there was no history of physical or development issues in my family and I was (if I do say so myself) particularly healthy. So no intrusion or sneak-peeks.

This optimistic rule was about to be challenged. Sarilyn suggested firmly an ultrasound was in order to clear up the mystery. I obliged with little fuss – I had taken the right stance and now that stance must fall because that is what must be done.

With a flourish, I opened my appointment book (I had a Big Job – I was Project Manager in the New Media Department at a small but respected design firm) to see when we might explore dates for the following week. Let’s see – meetings Monday, maybe can squeeze in Tuesday, Wednesday is free, Thursday I’m…. My thoughts were interrupted.

“Actually, I was thinking now.”

I looked up from my book. “Pardon?”

“I mean now. Right now.”

_____________________________________________________

I have set aside every Monday as a writing day.  No work, no appointments, no distractions.  Each Tuesday I will post an excerpt from earlier writing sessions.  Currently, I am focusing on developing a narrative – telling stories rather than ruminating and lecturing.   These excerpts will likely appear in chronological order, but I may deviate.   Other than fixing typos, no real editing or proofreading has been done.  Your comments/questions are welcome – your feedback will help me decide where to go next… Thank you for reading! Jennifer

_____________________________________________________