Read an Excerpt
CHAPTER 1
Chance
Trust that what happens in your life is for a higher, positive purpose that you may be unaware of
A push on the middle of my back marked my cue. My legs felt like jelly perched on nail thin stilettoes. My heart raced as I took three large strides before seamlessly pivoting to face the length of catwalk. The audience were dark blurs in my peripheral. The shoes were high, the polished concrete smooth and slippery. The lights were blinding, and my skin was coated in a thick layer of goosebumps. I was overcome with a sense of achievement.
The blinding lights and goosebumps couldn't help but remind me of theatre. I felt a sense of familiarity. All eyes were on me. Rather than doctors huddled around examining me, the audience stayed in their seats as their eyes grazed up and down my body. The circumstances could not have been more juxtaposed. In this moment, I could not have felt more alive.
It is easy to allow your circumstances to become your identity. In this moment, there was no room for my 'alter-ego' - the 'disabled', weak girl - the personality I could easily slip into when I was spending my days in hospital or bed-bound. I left her back in Australia, she wasn't invited on this trip however she was definitely part of the journey to get there. Every visualisation since my 2015 New Year's Eve countdown centred around this moment.
I had no idea of the "how" of getting there, and that wasn't my focus. I trusted the details would take care of themselves. I knew the most important thing was to believe I could. Sounds stereotypical, I know.
Self-belief seems easy when things are going your way, but when life presents challenge after challenge, and obstacle after obstacle, giving up or dismissing a positive story is easy. There were many times I could have given up on myself. The doctors gave up on me ever living a "normal life" before I was even born. It would be celebrated if I could survive, let alone live.
When I became old enough to understand that my life wouldn't be '"normal" I wasn't bothered by it. I didn't want a normal life, I wanted an extraordinary one. I made the decision that I would be happy despite my circumstances.
Once I understood that not everyone faced the same challenges that I would with my disability, I posed a question to myself; is being one in 10,000, or perhaps even one in 40,000 a blessing, or a curse?
It really is based on your perception. If you are the one in 30,000 that holds the winning lottery ticket, you're feeling blessed, but if you're the one in 465 that has had your ID stolen, you're feeling very frustrated.
To set the scene, it was 1981 and thick snow lined the streets of Denmark as the clear blue sky beamed from above. My Danish-born mother came from where she lived in Brisbane, Australia to hand-deliver gifts to her neighbour's brother. I've only mentioned two sentences and it's already obvious what happens.
Their first meeting was described with words like 'fireworks' when they retold the story. They tell me that when you meet the love of your life, you just know it. Mum, loving to create some controversial gossip in the small towns in Denmark decided to spend the next week at his place, as they just couldn't be without each other. Dad had been married previously and had a 7-year-old daughter and 17-year-old son, so despite such a passionate romance, unless mum could stay in Denmark, they couldn't be together.
The twist in the tale is not that mum found out she was expecting on her return home, but that she kissed him goodbye at the airport, and they fell out of touch.
In 1994, before telephone communication was properly utilised in love stories, my mum returned to Denmark to rekindle this love that nothing else was able to match. With the moral of the story being, 'you really should have called beforehand' she quickly found out that my father had gone to Australia for the wedding of his nephew. He was searching for her there! Luckily for fate, by the time my mother returned to Australia, my dad was still there. And just like that, as if thirteen precious years of their life had not passed, they picked up exactly where they left off.
Even though they were oblivious to the set up, they were smart enough to not make the same mistake twice and, in that moment, realised they could not wait another 13 years, or even 13 days before being able to see each other again. They both got the logistics sorted out, Dad applied for Permanent Residency from Denmark based on his relationship with my mother and came to Australia to create a life together.
My parents decided to start a business together as mum's job required her to travel one third of the year and they didn't want to spend that time apart. Based on my mother's extensive experience in the education department, especially internationally, they decided on an International Education Consultancy business that facilitated International Students to study in Australia. They launched this in 1995 and recruited some staff. The success of the business skyrocketed.
My wild parents were enjoying home life as a DINK (Double Income No young Kids) couple, mum having assumed that she was too old to have children. Of course, I had another idea, and after a few hormonal changes in late 1997, Dad suggested she may be pregnant. In Aussie fashion, my 44-year-old Mum's five-star response was "Bullshit" but my 54-year-old father insisted otherwise and went to the chemist to get a test.
Funnily enough, my mother was in fact pregnant, three months along by this time.
Now that we have come to the stage where I have developed to be the size of a plum, my life had officially begun. For you to make your own judgement, on whether my rare condition is a blessing or a curse, you need to hear the full story, and here it is:
As the weeks flew by, my mother went in for the 28-week check-up with the midwife where she was measured from the top of her pubic bone to the top of her uterus, and it measured a lot larger than what you would expect for a woman at that duration. Concerned, the midwife arranged a scan straight away.
Mum went in for her ultrasound, and the technician started scanning, looking concerned and measuring things before excusing herself. She left the room and called for another technician until about four people had scanned Mum and were huddled around her. What flagged for them was they were unable to find the stomach in the scan.
Mum interrogated the technician, "If my baby doesn't have a stomach, can it survive?"
This scored a very timid reply of "no", almost inaudible. Mum's next question left everyone in the room silent, "So you are telling me that I will give birth to a baby, who will only be able to survive a maximum of a few days??"
They arranged a scan for my parents the following day with a special radiologist who would be able to find out more. Mum went home and researched "Foetus without stomach". This search produced very grim results. Many tears were shed that night.
Emotions were tense the morning of the specialist scan.
Mum went into the small ultrasound room at the hospital where the specialist scanned, identifying a cluster of abnormalities. In this scan, they uncovered:
V- VERTEBRAL: He could see there were vertebral abnormalities; scoliosis, hemivertebrae, extra lumbar vertebrae and missing bones in the sacrum.
A – ANAL ATRESIA: He could see the anus was imperforate.
C – CARDIAC: A hole in the heart was found.
TE - TRACHEOESOPHAGEAL FISTULA: He found that the food pipe was connected into the air pipe, going straight into my lungs. It was preventing fluid from getting into the stomach, and that was why the stomach could not be seen.
R – RENAL: He found there was only one kidney
L – LUMBAR: He was able to measure my limbs to ensure they were expected lengths, and thankfully they were.
Other abnormalities they could see from the scan included excess fluid in the amniotic sack and a single artery umbilical cord. Despite them finding out all these things about me, they were unable to tell my mother my gender.
Fortunately, the specialist radiographer had encountered this condition once before. He was confident to make the diagnosis from the 28-week scan.
The collection of medical defects was identified as a single birth disability "VACTERL Association". It was such a rare condition that there was no known cause or 101 guide on what it meant for the baby. There was a one in 10,000 to one in 40,000 occurrence rate. The survival rates were poor and there wasn't a story of hope anywhere to be found.
My parents were devastated and heartbroken. They were always perfectly healthy – no medical issues in the family.
Could the problem be a recessive gene rearing its head for the first time in family history? Could it be related to their age? Or some environmental factor? The doctors were unable to provide any reason, response or answer.
The medical team couldn't determine the extent of my issues until I was born. All they could do was monitor the pregnancy. The hospital began liaising with the surgical team in the children's hospital, just a maze of corridors away from where I would be born. They induced mum five days before my due date (Thursday) as the surgical team was on standby for Friday.
In a whirlwind of ultrasounds, blood pressure monitors and maternity clothes, the time flew by until it was the day mum was to be induced. I was due the following Tuesday. I was almost carried full-term which benefited me in terms strength, development and weight.
Funnily enough, if I was to be born on my correct birth date I would share it with Mums twin brothers.
Going into the hospital that morning in early July 1998, my parents were unsure if they would ever walk out of the hospital holding their baby. What they knew for certain was that they would not be able to leave the hospital the same people as they were when they arrived. The carefree nights cuddled up in front of the TV with a glass of wine were never going to be quite as carefree anymore.
Mum, heavily pregnant, waddled to the bed where she was to be induced twice. The first one appeared to have no effect, and after the second she was jolted into labour with contractions not too far about. She was huge – carrying 7L of fluid, that when her water finally broke, it flooded the table and quickly overflowed.
With contractions so close together they assumed labour would be fast. Instead, from the morning, through the night, to the morning again, mum had fierce contractions. Dad had gone home to get some sleep as they both realised there was a very long night ahead of them.
As the doctors and nurses mutedly discussed what my plan was, a paediatric surgeon caught ear of it and joined the conversation. Quickly it was found that he was the perfect candidate to perform my surgery.
Dr B poked his head in to mum. By this stage it was the following morning and my delivery was closely looming. Dad was back after having a great sleep, much to the resentment of my exhausted mother.
"Could I take over your baby's care and surgery?" he questioned.
Mum and Dad wanted an expert. We were in a public hospital as they had no private health insurance and it was impossible for them to get any once they found out about my medical condition. Dr B had been training with a world famous Colorectal Surgeon overseas, who specialised in children with IA (Imperforate Anus) and Cloaca (only one opening). He had only returned from this training a mere month before my birth.
My life was to begin in this perfect synchronicity.
CHAPTER 2
Survival
And all anyone could take comfort in, was that this time too shall pass
In the final hour of a 26-hour labour, mum was unable to dilate past a certain point and my vitals began dropping fast. They rushed mum to theatre for an emergency caesarean. As soon as I was pulled from mum's tummy, the focus was on me - my parent's new daughter (despite their 'intuition' saying I would be a boy)! They removed mum's epidural and she experienced immediate drug withdrawals, beginning to shake.
I was ripped from the womb, placed on my mother's breast for seconds while she convulsed, unable to touch me – nowhere near long enough to bring my mother's breast milk down. There was no time to spare. The eagle eyed medical team quickly whisked me away, preparing me for surgery.
I was put in an incubator as the surgeons cleared an operating theatre. I was hooked up to machines in minutes. The nurses insisted on taking a polaroid photo so my parents "had a memory of me" if I were to die in surgery. These were the times where film took days to weeks to develop, and an instant photo was confirmation that every second was of great value.
It was made clear to my grief-stricken parents that I may not live through my first surgery. It was a life or death situation.
I was wheeled across to the children's hospital, for my first surgery at five hours old. My father followed behind the trolley and sat outside the operating theatre alone, waiting for an update so he could walk across and let my mother know. Mum had her baby ripped away from her and was now in the position of listening to other mothers cooing about their healthy, gurgling newborns. She felt like a failure as she couldn't have a natural birth, or a healthy baby – a feeling no one should ever have to experience.
Mum was told to try and begin pumping as breastmilk would be very healing for my little body once I was out of surgery. This was a huge struggle as the lack of contact with me made it almost impossible for her body to have the hormonal change needed for breastmilk to come down.
With this added pressure, mum was not having much luck. She sat next to these other mothers, from different cultures, third-world-countries, young and old, educated and uneducated, and she just could not come to terms with why her baby had all these issues with her body. She had always done everything right with her life – she had stable grounding, multiple university degrees and owned her own home, but she could not even produce milk or a healthy baby.
About two hours into the surgery, the surgeons came out and informed Dad that I had a 'high confluence' cloaca with a long cloacal channel, where my intestine (no rectum), bladder/urethra and two vaginas were joined together high up in my body, leaving one main opening. This flagged a lot of concerns, the least of them being my duplicated reproductive organs. The confirmation of bowel incontinence was made, as well as the strong probability of urine incontinence as well.
When my parents heard this, they could not help but cry. They had fears for their child's physical wellbeing as well as my emotional wellbeing – bullying, being the 'smelly kid' and being an outcast throughout my life.
As the cloaca was not functional and was impossible to leave as is, they gave me a vesicostomy (bladder) and colostomy (bowel).
The other issue that needed an immediate fix, was the tracheal-oesophageal fistula (joining of my food pipe and air pipe). They operated; making an incision under my arm to remove a rib and access the deformity. My food pipe was not even formed, having no connection with my stomach (oesophageal atresia). This pouch was joined up to my air pipe, causing anything I would swallow, including saliva, to flow back into my lungs.
At just over 10 hours old, I was wheeled out of theatre up to the Neonatal Intensive Care Unit (NICU) for close monitoring and recovery.
With medical assistance I could now eat, breathe, poo and pee thanks to the brilliance of the surgeons. As I had just had surgery on my food pipe and bowel, I was fed through a Nasal Gastric Tube and fluids through an IV to avoid anything touching the fresh surgical wounds. I was also on oxygen to help me to breathe.
My parents had to fight to see me in NICU as I was in a critical condition. I could not be picked up or even bathed as I was so weak. Mum was only able to come for short periods of time in a wheelchair from the Women's hospital where they were caring for her post-caesarean.
The surgery was deemed a success, but there was still no greater guarantee of survival at this time.
By day three, I was still not out of the woods and Mum discharged herself from hospital. The crash of hormones was in full swing and combine that with a baby who was barely surviving, my usually joyous mother was slipping into a post-natal depression that she did not admit to anyone.
By day four, the 14th of July, my parents had their "first cuddle" with me, also captured by the dreaded polaroid camera that depicted I most certainly was not on the home stretch just yet. Whenever my fragile body was touched the medical alarms would begin blaring, worrying my parents.
(Continues…)
Excerpted from "Behind The Smile"
by .
Copyright © 2018 Anja Christoffersen.
Excerpted by permission of Balboa Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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