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Situs Inversus
This wasn’t the first time, they’d relied on each other. Drawing strength from the other to do the hard thing, say the difficult words.
Their fingers interlaced, a life-line in turbulent waters.
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A hotel room in Paris, Charlie surrounded by a barrage of questions, who’s secret was he guarding. Nick took the plunge because Charlie was there, holding his hand.
“I know who it was, it was me, we’re dating...”
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In front of stern parents, unaware of the distress their middle child had been silently hiding from them. Charlie clung to Nick, to prevent himself from simply free falling. Nick surrounded their joined hands with his other. His safety net as Charlie stepped out into the unknown.
“My mental health has been really bad lately.”
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Time and again over the years, through the good and the bad their support unflinching.
In some regard this was just another one of those times. Only, they both needed that support now. Neither one taking on the designated role of strength. The rock to cling to in a moment of need.
Nick doesn’t remember a time when the atmosphere in a room had ever changed so quickly. The nervous excitement, the sense of overwhelming protection and the surge of love for a black and white picture on a screen. The jovial counting of vertebrae, and display of right and left hemispheres of the miracle of a brain being grown for them. Her gift to them both, made almost real in a grainy image on screen.
Then, it was quiet. The midwife continued to move the probe across Imogen's belly, the picture continued to beam down to them, but her commentary stopped. Her smile replaced by furrowed brow and concentrated, pursed lips.
“I’m just going to go and get a colleague.”
“What’s happening?” Charlie’s eyes were wide with fear and Nick place a hand on his shoulder in comfort, as their pregnant friend looked up, full of questions about what caused the sudden shift in tone.
“I want to make sure I’m reading this correctly. There’s no need to worry. It’s just hard from this angle. Give me a moment.”
Nick pulsed Charlie’s shoulder, “She’s just wanting a second opinion, Char. It doesn’t mean there’s anything wrong.”
Neither of them believed his words, but what good could come from jumping to the worst right now? She returns, colleague in tow and the scan resumes. There’s quiet talks of quadrants, and zoomed in images being captured, measurements on screens. Words neither of them understand, exchanged in hushed tones.
“Well?”
Charlie’s heartbeat is rapid, he tries desperately to stave off panic and Nick’s fingers once more interlink with his, preventing all-consuming fear from drowning him.
“To put it simply, it appears baby's stomach is on the wrong side.”
Charlie’s usual irritation at the lack of the definite article, is lost at the news that something is wrong with their child.
Nick immediately starts asking questions, needing to know more. What would any of this mean? What happens now? What should they do? Why does this happen?
They are warned that google is not their friend but when the fuck has that ever stopped him?
That advice had proved right though, and Charlie took his phone from him that night and replaced it with his steadfast hand, as silent tears fell.
“We don’t know anything yet, love. Don’t read anymore. We need to find out from the professionals what this all means.”
At first, practically speaking, it meant many more scans and appointments. Instead of the usual local community health care centres, they needed to visit the city hospital, with its consultants and specialists and family rooms for delivering hard news. Posters about the benefits of breast feeding alongside those offering support for dealing with pregnancy loss decorating otherwise austere walls, lined with green padded waiting room chairs, stood on blue linoleum floors.
Situs Inversus
That’s what they called it.
Though it was a rare condition, the general presentation was a fetus would develop internally, a mirror image of 'the norm' . Some unknown flick of a genetic switch and each and every organ grows on the opposite side. Unusual yes, but generally not much more than a medical quirk.
But not in their child’s case. Their insides a jumble, seemingly following no precise pattern.
At the first additional scan, they were greeted by a consultant infant cardiologist.
Nick felt his own gut twist as they explained the connection between this condition and heart abnormalities. The reason for their link, left vague. Only that one organ out of place would likely not be the end of their worries, and that most seriously of all would be the “faulty plumbing” of the heart.
Something clicked that day for Nick.
He’d experienced it already, once before. The feeling of care for another that could outweigh concern for one’s own safety. When Charlie was at his worst, it was like living with his heart outside his body.
Only now, the sense of responsibility, the fear, the understanding that having a child meant entering into that state permanently.
Of continually caring infinitely more about the life of another than yourself. That little undercurrent of worry that they were safe, they were cared for and protected would bubble underneath, his day to day, from now onwards, for as long as they both lived.
There was only so much that could be determined before birth. They learned words like “interrupted inferior vena cava” - the returning blood vessel to the heart taking a more scenic route, apparently.
Their child continued to grow, but no more reassurance could be offered. The impact of their ‘difference’ a black box of uncertainty until birth and perhaps beyond.
Talk of birthing centres and water births and mood lighting were binned in favour of medical teams on hand and tests and procedures stretching out in front of them, till they determined what any of this, all meant. In the end, the child was breech and a section was agreed on. No late night phone calls, or grabbing of hospital bags and driving Immy, panting to the hospital gates.
Just taking her out for the apparently necessary carb loading meal the night before, then nil by mouth from midnight onwards. They drove her to the hospital for the allotted time the next morning. A dedicated appointment, to meet their child.
They were happy, they were excited. They still had reason to believe everything would be fine. But under every interaction a layer of doubt remained. Every time a colleague questioned, how the planning was going, were they ready, did they have everything they needed? Was their nursery decorated or did they have one of those “next to me” cots set in their room? A little part of them didn’t fully believe they’d be taking home a healthy child.
Didn’t fully believe they would be taking home a child at all.
That was worst case. It wasn’t the expected outcome but it was still there, an underlying concern. This joyous, life changing, earth shattering moment, when you, and even your partner would no longer be the centre of your own universe was tinged with doubt and fear of the unknowable.
Maybe it’s like that for everyone. Maybe until you have them warm, and pink and screaming in your arms, the doubt remains.
The difference was that even then, when the doctor placed the tinniest baby, Nick had ever seen on his bare chest he still didn’t really trust the evidence of her healthy existence before him. As she looked up with simply the biggest eyes ever to be discovered in the natural world, blinking and surprised by the sudden intrusion of light to her erstwhile dark existence, he couldn’t yet believe she would be fine.
Still couldn’t fully allow himself to sink completely into the joy, and the overwhelm of that moment. The undercurrent of fear that this ‘abnormality’ would mean this was all the time they had.
It didn’t prevent the love though.
“I’m your daddy, I’m going to look after you. I promise.”
5lbs 13oz. That’s all she weighed. She wasn’t early, she was just really, really small and as she was transported in a little incubator to perform the first check on her bowel, other hospital goers stopped and stared and whispered about how little she was.
“The tiniest baby, they’d ever seen.”
Nick wanted to scream, she’s perfect. She’s just small.
But he didn’t know. Didn’t know if the difference within was the cause, or if it was just a co-incidence that she weighed so little.
The midwives offered their reassurance. That while she might be in the 2nd centile, that was for full term children. She was small, but not to a degree that should overly cause concern, just make sure she’s fed. Regularly.
But every time she fed, they worried.
Worried her guts would twist. Worried her malformation would prevent her from taking on the nourishment she needed.
On her first full day of life the new little family were transported via ambulance to 'sick kids' for the first in a long line of checks.
A barium enema.
It was as bad as it sounds, and she squirmed and cried and turned puce as they inserted the tube and filled her with the silvery white fluid in order to watch it light up her bowel, via x-ray.
“Nothing of concern. We’ll need to review the case.”
In the end, she was released under strict instructions to be hyper vigilant around vomiting. Anything green, don’t hesitate, call for an ambulance, don’t delay.
As if being at home with a new born didn’t put you on high alert enough. As if they needed another reason to sit bolt upright in bed at night, when either she cried or didn’t cry enough.
The months that followed were filled with so much joy and also with the sleepless nights and doubts and trials of any new parents but always with the additional layer of uncertainty
There were more scans, concerns she might be missing a spleen. Worries her appendix would also be in the wrong place leading to future misdiagnosis, should it ever rupture. There were visits to heart specialists. Travelling across town, in busses with slings, and change bags and bottles and blankets.
The stomach was certainly in the wrong place but from what they could tell most other organs were where they should be, the spleen they thought could be missing was found and while not everything was correctly situated, it all seemed to function as it should. She was growing well and “shitting like a trouper” as Nick helpfully put it to one slightly prissy doctor.
“In these cases, the biggest risk, is a twisted bowel. There’s only so much a scan can tell you. We need to get a proper look.”
Keyhole surgery. On their tiny infant. Anaesthetic, and fasting, and incisions.
Charlie stroked what little hair she'd grown, as the mask was placed over her face, and her eyes glazed.
“You’ll be fine my little love. We’ll be here when you wake.”
He turned to Nick, to find him in pieces. Tears streaming, unable to maintain any semblance of strength.
“She’s just so small.”
They clung to each other as their baby girl was wheeled away, for the seeming unending period of 'what-if'.
After hours of waiting, Nick’s phone rang, and his heart pounded from its new home in his mouth.
Charlie nodded and reached for him, like he had done so many times before.
“Take my hand and we'll do this together.”
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Eight years have passed and all that remains of that period of fear are two tiny, white, almost imperceptible scars on their daughter’s stomach. Though for both of them, they have continued to live with their hearts forever located outside their own chests.