Matilda In The Middle by Katy Lironi – Chapter 8
In January 2003 I had an early miscarriage. I don’t say early to mean it wasn’t important and traumatic. This was a wanted and planned, as much as these things ever can be in my world, pregnancy. I was vocal about how well I felt, no early pregnancy exhaustion, no nothing, and with two toddlers at home, this state of affairs was welcome. Then came the bleeding, obviously on the same day I was meant to catch a flight to visit my best friend in Brussels. My child free trip wasn’t to be and neither was the pregnancy. We both knew as we drove back from the hospital that we were lucky. We were driving back to a home full of robust life. The disappointment and sadness lingered, seeped and dissipated, for a life that wasn’t meant to be. And so came the life that was meant to be.
By spring I was pregnant again with the usual first trimester exhaustion which I eagerly anticipated and embraced this time round. I was also very nicely classified as a high risk mum, having attained the magic age of 37. This meant I was offered a 20 week scan as opposed to just the 12 week booking scan. I jumped at the chance to see another image of our unborn child and we set off for the hospital on the appointed date with 3 year old Amelia in tow, desperate for a picture of her new baby brother or sister. We hadn’t a thought or a care about what this scan could potentially reveal to us. And so, like any other expectant parents, we were completely unprepared for what came next.
We had no idea when we bundled ourselves into the car on that late summer day that our family’s story was about to change shape and take on a whole new dominant dimension. In retrospect, it seems like everything until that moment was the old life and then there was this one, which almost instantaneously became our reality, our story.
It was grey in Wishaw as we parked the car and swung Amelia between us as we walked through the car park and into the hospital building. We took our place in the waiting room, reading to Amelia and asking her if she wanted a photo of the baby we were about to see. She was silent with anticipation and excitement.
The obstetrician had a student at the scan with him and they were chatting and discussing what they saw. At some point I became aware that the chat had lowered in pitch and intensified in urgency. I kept breathing, aware of every inhale and exhale as I tried to quell my natural urge to catastrophise. The minutes stretched, elongating as time warped and voices distorted in my buzzing ears.
And still he conferred with the student. On and on. Then he stopped.
Your baby has a nuchal fold, right here, at the back of the neck, he said, pointing at the screen.
We just looked at him. It meant nothing to us then.
Seeing our miscomprehension, he continued
It’s an extra piece of skin at the back of the neck. It can be an indicator for Down’s syndrome. Some babies can be born with a nuchal fold and its presence here is not conclusive that you are carrying a baby with Down’s syndrome, but it is an indicator. That’s all we heard. Time stopped and we couldn’t even look at one another. I could only breathe. In and out. In and out. Don’t look at anyone. Concentrate.
The facts dropped slowly as if from a great height, into the room and shattered our reality, just like that. I was lying flat, with gel all over my distended middle. I just stared at him. What on earth was he saying? I couldn’t look at Douglas or Amelia. Confusion started spiralling around the room and my blank head.
The doctor talked some more about the nuchal fold and limb length and then told us we could see a genetic counsellor in the next room who would explain things further and discuss our options.
Voices in my head…
We have options? I have to get up off this hospital bed, gather my family together and consider my options.
We were ushered through to the pastel coloured room next door to meet the genetic counsellor. Bland office furniture and a box of tissues on the table in front of two dismal blue chairs.
I make copious, furtive use of the tissues as Douglas takes Amelia, our mini ornithologist, to gaze at birds swooping in the overcast Wishaw sky outside the hospital window. I wonder silently if this baby will have passions like its brother and sister – tractors and birds and horses and football, dinosaurs and dish-washing in sinks full of bubbles.
What have they told us and why?
Yes, it appeared, this was really happening. And no one was suggesting we get a print out of this scan, a photo to proudly flaunt. No one offered it to us at all until we asked. They were too busy explaining the amniocintesis procedure and attempting to book me in for one. It was assumed we would want one and it was unspoken why.
We got in the car as swiftly as we could, Amelia proudly clutching her scan photo that they finally gave us. We were almost home when we turned to one another –
So, what about the amnio, are we meant to get that? She said there was a 1% chance of miscarriage.That’s 1 in a 100, I don’t think we can take that risk. I don’t want an amnio and if it tells us the baby has Down’s syndrome so what, it won’t change anything anyway so what’s the point?
What a relief! We both said and felt exactly the same thing. It was one of those things you just don’t know because you never expect to be in that position. We discussed very little after that, we just moved forward one day at a time with positivity. Life was busy and there wasn’t much time for reflection or planning. I didn’t want to explore the world of Ds too much because the doctor’s diagnosis was very nebulous, he told us there was a 50% chance the baby had Ds and all he could do was scan me monthly to gauge how the pregnancy progressed.
So onwards and upwards we went. The blissful pregnancy bubble had been burst but we just got on with it, choosing to neither immerse ourselves in the world of Down’s syndrome, nor find out for certain if the baby did indeed have Ds. It was a weird state of mind and body to exist in for half the 40 weeks. We mostly forgot about it until the monthly scan date came around, the only “treatment” the consultant could offer us. Then we’d have a tense week until the inconclusive results of yet another scan. No other indicators of Ds came to light and we were beginning to loose ourselves in the chaos that is Christmas in a house full of toddlers, with the baby due in mid-February, when a scan happened that changed everybody’s mind set.
It was the week before Christmas and the scan was going inconclusively, as usual. I was struggling up off the hospital bed, preparing for the blast of cold outside the stifling hospital building and thinking of the countless festive tasks awaiting me, when the doctor went to plot the scan results. He stopped us as we opened the door to leave.
“The baby’s weight hasn’t increased significantly since the last scan. That could be an indication of other problems. So I’d like to see you again in three weeks this time. But don’t worry! Just go off and have a good Christmas!”
And that was it. We found ourselves outside in the cold with this brand new, scratchy little ball of information so casually flung at us. We caught it and held on tight. So indecisive, yet so decisive. I felt myself disappear into a downward spiral of newfound reality based on an almost throwaway comment, and not much else. I don’t think medical professionals truly understand how much we anxious patients read into every glance, utterance, gesture and tone of voice. It’s hard to think of the right questions to ask when you’re in the thick of it. And then the moment has passed and they’ve disappeared round the corner of the long hospital corridor, leaving only an antiseptic smell in their wake.
And so Christmas came and went in a bit of a haze. We spent Hogmanay, as we used to, with friends in a remote cottage by the sea. Lots of head clearing walks in the West coast January wind, a house full of toddlers ransacking the rented cottage with felt pens and lots of boxes of Christmas chocolates. Not sure there was much relaxation.
Three weeks later I squeezed myself and my not so large bump into a midnight blue velvet dress and pink fishnet tights and headed off with Douglas for a last child free night before baby’s arrival in about 3 weeks. We were off to Edinburgh to stay with friends and go to see the newly reformed Fire Engines supporting The Magic Band at The Liquid Rooms. We stopped off at The Bow Bar, and it was heaving and smoky, as bars used to be. I tried to make the most of my not-so-impressive bump to get myself a seat and it worked. But as I bent to sit down, I experienced what can only be called a buzzing in my lower back. I was stuck half way between sitting and standing as my back went into spasm. I panicked, I can’t move, I whispered to my Ann. I don’t recall how long it lasted, but the feeling gradually subsided and I was able to perch on the edge of the hard-won seat. Of course, it turned out to be more than a strange sensation, and actually the onset of premature labour.
It wasn’t however, until 24 hours later that we realised that the excitement of a night out had stirred a little, secret girl into action, made her decide that it was to time to get out into the big, wide world while she could. Labour for real started the following night, back home in our Lanarkshire cottage, Amelia and Dugald in bed, the strange and indescribable thing known ominously as “the show” suddenly showed itself. Third child and each one entirely different. First induced 10 days over due date, then second, waters broke, interesting experience, a week early, and now the weird show thing at 37 weeks with number 3. By the time I got to the twins 2 years later, I packed a bag for my 37 week check-up and refused to leave the hospital until they agreed to book me in for a C-section the following day.
Douglas and I swiftly found ourselves rushing to the hospital on a frosty January night, nanna and Auntie Jo ensconced at home as we faced a great big unknown. My conversation replayed in my head that I’d had with Ann just 24 hours earlier, as we departed the gig for some late night snacks at a local café. Two pregnant indie girls who’d had enough of rock-n-roll for the time being and just craved some tea and toast. I confided that Douglas was prepared for the baby having Ds but that I knew it didn’t. I instinctively felt this pregnancy was altogether too normal, the baby too active. Well, I was now aware that all that was beginning to change. The baby had been snoozing for far too long. Still and peaceful, not causing a ripple on my tight, taught skin. The hospital was serene and relaxed. We wandered around a room with very little pain or drama and a very calm student checking up on us.
Eventually she said, Can you drink this cold water, baby seems quite sleepy? Things went into full hospital drama fairly quickly from then on. Before we knew it we were having a conversation with a be-suited, middle-aged consultant who informed me I’d be having a C section. I countered the suggestion by filling him in that this was my third child and I’d actually planned a home birth just like my last child, so, no, I didn’t really think a C-section was on the cards. Calm authority won me over. “This baby is very sleepy and has a very slow heart rate, it is showing signs of distress. You’ll have a C-section forthwith.” I’d never heard the word forthwith uttered before and I bowed to its pressure.
The midwife was blue-sea-calm,
Swift, brisk and smiling,
as she removed the chipped
remnants of last summer’s
Toe nail polish
I swiped the red lipstick from my lips
popped my contacts out
To assume my new identity
In shower cap and smock
You wore clogs and blue
Pyjamas, as our daughter was lifted,
Into our harsh, sterile world
Everything hyper real, like a film
What’s happening? What’s happening?
Why isn’t she crying?
I demanded from my beached position
As if you had some other
You tried to catch each floating question
gently, with uncertainty
Finally I hold her,
For surreal seconds
Staring mesmerised, at her tiny
Triangle of face
Trying to decipher in her baby features
“She does doesn’t she?” I ask you,
The stifling theater air.
We need her to be here
To be well
To be our little girl.
The reality of our baby having Down’s syndrome became a secondary issue to making sure she survived through the night. Not that I was aware of that at the time. From the moment the be-suited head consultant entered the labour room and announced that I would be having a caesarean section “forthwith”, Douglas and I handed ourselves and our unborn baby over to the medical team in mute submission. Things happened so swiftly and calmly, I was totally unaware of the drama unfolding around us, the special care nurses assembling in the corner of the theatre. Then suddenly it was over, the baby was out and all was quiet. You have a little girl the midwife said before hugging me tightly and whispering “I’m so sorry.” I was confused. I turned to Douglas “Why is the baby not crying?” I asked as if he might have a good reason. “She’s very small” was all he could manage. “They’re working on her.” Working on her? What did it all mean? I’d had candles and music at her brother and sister’s births. But now all was bright and sharp and wrong and it didn’t feel like our lives. I waited patiently for something to change.
There was a brief, high, tiny baby cry, but it brought relief all round. Oh good, she’s fine, I thought, and that’s the thought I chose to cling to. From then on I was primarily concerned about when we could take her home. The reality was too grim to consider and the morphine that was being dripped into my veins gave me a skewed and giddy, altogether more acceptable take on unfolding events. (Douglas didn’t have the benefit of these medicinal mind altering drugs and bore the brunt of discussions of emergency helicopters in a hyper sober state.) But really, Matilda’s battles had only begun, she was out and she was breathing. Hurrah! Over the next three weeks she fought her way back from pulmonary hypertension, two collapsed lungs, pneumonia and some secretive infections that caused many junior doctors to mistake her for a pin cushion. Her heels were purple with needle pricks and I didn’t really know who she was.
Often my wounded belly and I would shuffle painfully along the corridor from my ward to hers, hugging the walls in case I keeled over, only to be told “You can’t see her just now, we’re working on her.” I became very submissive, child-like almost in my desire to do the right thing, but having no clue what that might be. “Ok, can I see her later?” I’d ask politely, requesting a visit with my own daughter, my precious new born who, until hours previously, had been snug and protected, hidden inside me. But she hadn’t been safe and thank God she was out, but was she any safer out here in this strange, sharp new land? I busied myself in the breast pumping room doing all I could for her at this bizarrely protracted moment in time, when she was neither inside me nor beside me. I surrendered her survival and her wellbeing to the bleeping machines she was hooked up to and the round-the-clock medical care she was receiving. Time became a long, slow, painful concept and Matilda was sedated to save her from the discomfort of the respirator.
Family came and went, bright-eyed and bearing flowers and I greeted them in my solitary hospital room while Matilda lay in isolation along the corridor. Two by two they’d make sterile pilgrimages to witness her in her box, tubed and hatted, jaundiced now and skinny as a famine baby. I greeted everyone with a huge smile and relentless positivity. Only my parents allowed their tears to show. “She’s fine” I’d say,” look,” brandishing my only photo of Matilda, grey and naked with purple shadows around her eyes and tubes up her nose. When the nurses gave it to me I thought she’d died, but no, it was to help me with breastfeeding and I showed it proudly to each visitor who came through the door. Now it’s safely hidden away out of sight because we cannot bear to look at it and no-one really wants to remember that time. Matilda knows she was ill and in a special box and her sister who was three at the time wrote about it when she started school a year and a half later.
But I don’t think it was traumatic for her brother and sister, we didn’t sit crying around the incubator, we sang her nursery rhymes, laughed at her funny yellow, woolly hat, talked about when she’d come home, tickled her still and tiny toes, laughing gleefully on day four when one of them moved minutely in response to our touch. Slowly, she was coming round and eventually, we would get her home. There was never any question of that in my mind, even when the midwives insisted Douglas stay with me in the hospital the first few night after Matilda was born. I thought they were over-reacting, he was needed at home. “We have a bed made up for him”, they said, “We really think he should stay.” I chose to ignore the subtext and we had 3 nights B and B in the hospital, tea and toast at our bedside for supper and breakfast. No night time feeds, no nappies to change, no toddlers to juggle. A strangely calming post-birth experience. We could almost forget where we were and why.
The sister and brother
Love the baby’s yellow, woolly hat
With the hole in the top
To attach lines and tubes
Another for feeding
Through her exquisitely delicate nose
A huge respirator
Strapped to her rosy mouth
Sticky patches all over her
Monitoring this and that
And the other, I can’t ask,
On noisy, bleeping machines
She lies serenely, sedated
A mollusc in its shell
Her glass box,
While visitors stream by with
Flowers and chocolates
Say how beautiful she is
With all her tubes,
Her jaundiced yellow face
Obscured by medical bits
Keeping her alive.
Waiting till they leave to cry.
I see the tears,
Hiding stubbornly in their eyes
She lies still as a pebble,
mute and content as
I whisper-sing lullabies to her
The brother and sister
Point and touch and wave,
Then go to play in the toy room.
we leave our baby in her box
to join them
Hoping she’ll be with us soon.
4 Days Later
After 4 days the doctor asked
“Have you held her yet?”
No….a few frantic seconds on
the operating table
We sat in a rocking chair
She and I,
Close enough to her glass box
For the tubes to stretch
And my tiny, swaddled daughter
Looked up at me and
Minutely but perfectly,
Before drifting off to sleep.
A silently moving nurse
Put a box of tissues within my reach
As I rocked slowly,
By my tube-clad, precious bundle
In the semi-light of
Neo-natal intensive care
Surrounded by the earliest,
In their own
Tropical glass worlds.
Their wombs with windows
To the outside world
When Matilda came out of intensive care after five days, things improved. We got it together with kangaroo care where I’d visit her and sit with her snuggled on my bare chest, attempting to breastfeed this exhausted, traumatised baby, as we tried desperately to bond like a normal mum and new born. This worked to varying degrees, sometimes the ward was just too busy, sometimes the midwives weren’t accommodating. But when it occurred it was a reminder that one day this would be our normality, this was the life we were destined to share together.
And then out of the blue, after three weeks of me badgering the nurses with “When can I take her home?” the senior consultant paediatrician had enough, ignored the varying degrees of infection showing in her blood, and discharged her. “Take her home and treat her like any other baby,” were her words, “She just needs to be with her family.” Just what we’d felt all along.
We have a lovely photo of Matilda taken the same week she was released from the antiseptic world of the special care baby unit. She’s a minutely skinny body floating in the bath between her dad’s knees and flanked on either side by the robust bodies of her brother and sister who were so delighted she was home and out of her “box.”
Our new life was about to begin and Matilda would never cease to surprise us all.