I'm writing this very personal piece because it's a story worth telling, and one I need to tell. And also in the hope that any parents who have a child born with birth asphyxia find me, and are comforted by the tale of Ariana.
I had an elective c-section booked for the 28th March 2013. I had used ovulation test kits, when trying to conceive, and am thus able to recall the very moment when Ariana sparked into being (overshare, perhaps :-) Nonetheless, I know that my pregnancy was 1 day short of 38 weeks when I was wheeled into theatre. My husband, Yaghoub, and I, were excited, of course, but also that weird type of numb born only of being completely overwhelmed and unable to fathom the dimensions of current events. I had had a miscarriage immediately before Ariana's conception, and, albeit only at 6 weeks pregnant, the horror and emotional injury of that had tainted each day of my pregnancy. It never seemed "real" to me that I was growing a person. It never truly resonated that there would be a living, breathing human in my arms when the gestation was complete. I still don't know if this was a premonition, sixth sense, or simply what all first-time moms feel.
So there we were, on the 28th March, "before Ariana". I'm a planner, and I have a misguided yet entrenched cognitive distortion that "buying things" and "planning things" will secure positive outcomes. Thus I had gone to town - quite literally - with my hospital bag, including brand new pajamas, bath towels and pillows, on top of all the paraphernalia required by the hospital. I even packed a portable baby monitor, thinking it nonsensical to need one at home, but not in a maternity ward. I went to the hospital, long before my check-in time, to secure a private room. I had everything "sorted". I've posted a picture, below, of my "stuff". My husband was somewhat embarrassed by the overkill.
My operation was scheduled for 4pm. When we arrived, I systematically unpacked my suitcases, finding a home for each item. Yaghoub had brought home-made lunch for himself (Persians frown upon restaurant food), as well as a flask of Persian tea, his mainstay. I was, of course, "nil-by-mouth" for the imminent procedure.
So, like clockwork, 4pm rolled around and, with quite a sense of pomp, ceremony and anticipation, a team of doctors and nurses wheeled me into the theatre. I was quite detached at that point, feeling somewhat like an observer in a process totally beyond my comprehension. I even remember squabbling with Yaghoub, who wanted to finish his tea, and then again over cameras and iPads. There was a buzz in the air as each medical professional went about their typical tasks, with precision and a sense of habit born of repetition. The anesthetist stands out in my memory, because she was "nice". I've always thought of anesthetists as being quite dour, impersonal, robotic souls. But this one was animated and engaged. I liked her. She performed the epidural, and within minutes, I was paralysed, and slightly nauseous. The two gynecologists who team together during c-sections began to slice me and burrow away in search of my warm little bundle that whose moment had arrived. I could see the surgery being performed as a reflection in an overhead light, which disturbed me, and my eyes darted between watching and trying not to watch. A gush of what looked like blood filled my open belly, and I panicked, thinking I was hemorrhaging, but, on enquiry, was told that the pool was amniotic fluid. They were getting closer!
The anaethetist, standing to my left, told me I was about to meet my daughter. Peering over shoulder and into my belly, I suddenly heard her say, "oooh, she's a little flat"... "she's quite flat"... "we may need to wake her up..." "paed, are you ready?" "oooh, she's very very flat". I didn't really react or think too much. I heard words but they didn't create meaning in my brain. I think I asked what she meant, but can't recall her answer. And just like that I saw a grey, limp, lifeless thing get passed across the theater from my person to the attendant pediatrician, waiting at a little baby station to my right. She and the anethetist went about working on my dead baby.
Silence.
Minutes ticked over. Silence.
I asked what was wrong, knowing they wouldn't be able to tell me.
Silence.
More minutes. My husband and I both believe we heard a little yelp at this point, followed by the same nothingness, but the medics seemed to disagree.
Silence.
Then an instruction to call for an NICU bed and a ventilator.
Silence.
It turns out "flat" meant... dead. I mean, she had a faint heartbeat, so this isn't entirely true. For those in the know, her 1-minute and 5-minute Apgar scores were both 1 (out of a possible 10), that "1" awarded simply because there was a faint heartbeat.
More people arrived, NICU bed in tow, and within seconds my baby was on board and being wheeled out. Yaghoub, at my encouragement, followed the paediatrician with our sick little soldier.
The gynaecologists hardly reacted. They certainly never addressed me personally, but kept sewing away. I did hear one say to the other, "And people want natural deliveries... Just imagine if this baby was a vaginal birth..." But nothing else. And in a very clinical, very impersonal manner, I was "complete", moved onto a trolley bed and wheeled back to my ward. Where I was alone. And silent.
SO there I lay. Alone. Silent. Wondering what on earth HAD happened. What on earth WAS happening. Thinking of the joyful SMS I'd prepared, to send once I had Ariana on my chest. But I couldn't send it. She wasn't healthy. She wasn't a bouncing baby girl. I actually couldn't communicate with anyone, as I had no idea what to say. So I cried. I was in a room filled with all my things. And all of her things - nappies and cute little outfits and bum cream. But my tummy was empty, my legs were paralysed, and she was somewhere else. I didn't know how to feel.
After what seemed like an age, Yaghoub and the paediatrician came in. She stood next to me, and told me that my baby was born with severe birth asphyxia. She said that her pH was drastically low - so low that she should be dead. She said that such a low pH would imply that my baby had been in distress for "hours or days". She couldn't tell me why. She was incredulous that my c-section was a scheduled one, and not an emergency, since a few hours or days prolonged and I "would have had a stillbirth". She then said that my baby had been horribly oxygen-deprived, and that there is thus a high probability of brain damage ("Sorry, what?? What did you just say?? That is the most ridiculous thing I've ever heard. I'm actually just going to blank you now, and not listen any further", went my inner speech). But I listened. The "good news" was that treatment exists: contemporary studies have shown that cooling an asphyxiated baby's brain to 33 degrees, for 72 hours (while sedated and on a ventilator) seems to reverse cell damage, and short-circuit further brain injury. And thus Ariana's best shot was this hypothermia treatment. She was, thankfully, merely informing me. My baby was already on ice. I asked if I could see her, but was told that, with my epidural legs, I would have to wait until the following morning.
At this point Yaghoub produced a picture... The first visual image I had of my baby. I'd caught a glimpse of her - a
glimpse - as she was born. But this was my first real sighting:
I don't remember feeling too much when I saw this... I think there is a horror so specific that your senses automatically protect you from the smouldering pain of true understanding. So I looked at this image, on his phone, and thought very little. There may have been a hint of guilt, but it didn't reach consciousness: "is this somehow my fault?" I looked at my husband, who had been present and attentive at her side. I saw his pain, confusion and shock. Something in him was broken. I was sad for him. And perhaps guilty again... But mostly just numb.
Then there were family and friend phonecalls and sms's. I don't remember those. Nor have much recollection of the rest of that night.
In the morning, I showered and was allowed to go to the NICU to meet my baby. I was still in a daze. I entered the NICU, and asked for my baby. I was directed to a little stall. And there was the child I'd seen on Yaghoub's phone the night before. She was completely sedated. Her head and body were wrapped in special paper blankets" that served the purpose of keeping her cold. These were fitted with tiny electrodes, attached to a cooling machine, which regulated her temperature at 33 degrees. There were tubes and pipes everywhere. And an orchestra of machinery around her bed. Apart from all the standard ICU paraphernalia (vitals, medicine management, etc), she was also connected to a constant EEG. Asphyxiated babies often have seizures and brain bleeds after the "insult". (Insult, yes. That's how that the medical fraternity refers to massive oxygen deprivation and near death). The EEG thus monitors brainwaves and immediately alerts NICU staff to seizure activity. Such activity would suggest probably damage, while usually causing further neurological upheaval. I don't remember anyone ever saying to me, "your baby could die", but this was quite clearly the case. Feedback from the doctors was relatively benign at this point. The facts were that Ariana was stable, and on ice. Not much was going to be gleaned of her true state until she was "reheated" in days time.
The next day we found her quite swollen:
As much as her eyes seem open here, she certainly wasn't conscious. We weren't able to hold her at all. And again, expert feedback remained that she was in a process, and that little could be said at that point. Thankfully, she hadn't had any seizures at all.
The picture above was also taken on Day 2, the swollen day", during a nappy change. The strange marks on her arms are indentations from the cooling blanket.
The picture below was taken on her 3rd day of life, and the final day of being cooled. We were told that they would be "rewarming" her from 5pm that evening, and that we would see dramatic differences once that process was underway. I think this snap may, in some way, portray the helplessness and confusion that both my husband and I felt.
The picture below was taken on her 4th day of life. I still find it "so damn cute", despite the seriousness of its context. She had now been rewarmed, but had developed jaundice, and thus spent a day under the phototherapy lamp. She was still on a ventilator at this point.
Her 5th day, illustrated below, was amongst our more positive. We arrived to find her pink and awake, which was amazing. She had also been taken off the ventilator, and placed on a c-pap, which is essentially a big step in the right direction. We even got to hear her shriek. The nursing staff were, at this point, also hard at work acquainting her with her sucking reflex, since she had never had cause to use this, and it's a completely natural reflex, if activated on the day of their births, but far less so when removed from the breast and bottle for a time.
The feedback we got at this point was quite positive. She'd had no seizures at all... No brain bleeds, also typical of asphyxiated babies. I do remember though, watching the paediatrician testing her muscle tone, by literally sitting her upright and pushing her forward. If adequate, she should resist and pull back. My little girl just flopped in a heap, and I must admit my instant thought was, "oh God, she's got Cerebral Palsy". The doctor just said, "she is a bit floppy... But she's been through a hellova ordeal... Let's give her a chance". I appreciated the humanity and sensibility in her words.
As I’m writing this, I feel that I’m
becoming long-winded, and my memory of these days is also somewhat patchy. I
know that there was a blood transfusion on one occasion, and I know that I’ve only
recounted several of the twelve days that she was hospitalised, but recall no
further detail of the rest. It certainly didn’t feel that long. I know as well that I could never, in one piece of writing, express all the dimensions of our experience and hers.
Truth be told, I think that our little
girl was well from the time she was woken from her long, cold sleep, and this
is essentially the miracle of this tale. The literature is quite negative towards
this condition. Many asphyxiated babies die. Some live, and have massive
handicaps. But in Ariana’s case, the 9 days following her hypothermia treatment
really just involved addressing the side effects of the treatment, and
preparing her for the world outside. The
“graduation” criteria were a clear brain, liver, heart and kidney ultrasound, a
relatively normal, seizure-free EEG, and tolerance of all of her bottle feeds.
Two days before her discharge, we had a meeting with the paediatric
neurologist; a beautiful, warm and vivacious women who bounded into the ward,
effervescing about how “awesome” our daughter is, and what a phenomenal
recovery she’s made. Her exact words were, “Debbie, we should be having a very
serious conversation today, about Cerebral Palsy, retardation and disability,
but all I can say is that she’s awesome”. Despite having a somewhat
complicated, yet quite fundamental faith, I know beyond doubt that this was the
work of my baby’s maker, and thanks to the prayers of those who love us.
The doctor did caution that she’d need to
monitor Ariana’s milestones, and have her assessed neurologically from time to
time, but that all indicators showed that she was leaving the hospital as a
normal little girl.
Since having her home, we have fallen so
much more in love with her. She is truly just the sweetest thing either my
husband or I have ever known. She becomes more her own little personality every
day, and we can’t imagine not having her. At 11 weeks, now, she has reached her
first milestones. She smiled, as she should have, around 6 weeks. She engages
us, or allows herself to be engaged, in little “cooing conversations”. She
lifts her head up during tummy time. At a somewhat routine ophthalmology
screening, a question was raised around the extent to which she can see, due to
a perceived paucity of “visual fixation” and tracking. Because she’s an
“asphyxia baby”, she was sent for an explorative MRI. The thinking behind this
is that oxygen deprivation at birth has, at times, been known to damage the
occipital cortex of the brain, and this chunk of grey matter is responsible for
sight. Similarly, the optic nerve can also be at risk. The words “Cortical
Visual Impairment” were never uttered by any of Ariana’s doctors, but some Googling confirmed that this was the known enemy, and it’s bad.
Basically, in such a patient, the eyes are anatomically perfect, but sight is
compromised or non-existent due to a severing of the connection between the
brain and the eyes. I became an expert in this disorder pretty much
overnight. But the MRI came back as
“completely normal”. This was a
particular victory since the scan screened for ALL brain damage, not just that
of a visual nature.
We still don’t know exactly where we
stand. The doctors are still not entirely satisfied with her ocular behaviour, and
while she looks at us intently, and follows objects passed in front of her,
there may still be a few battles to wage in matters visual. She even has quite
a high-tech test booked at Steve Biko Academic Hospital in Pretoria in two
weeks’ time. My feeling is that we’ll just “go with it”. There is no harm in
further peace of mind, and her infant neuroplasticity is such that, with early
intervention, many issues identified now can be remediated anyway. And for
any that can’t, I’d still rather know.We have been told that disorders can “crop
up” as she grows, and even discovered recently that a perfect MRI now can show
damage at a later date.
No parent actually knows where they stand
with their little baby, whether medically, psychologically, socially or
existentially. This has to be part of the wonder of being. And I’m sure
there’ll be grace for us if we have an ailment here and there. My greatest sense, however, is that Ariana
Grace has already been shown grace, and that she’s just what and who she was
meant to be.
Ariana going home:
Asleep in her own bed for the first time:
At about 4 weeks:
At about 6 weeks:
Deeply engaged in conversation with Dad, at about 10 weeks:
One of our most recent pics, flexing her "smiling muscle".
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