Well here we are. Just over ten years ago our first child was born - our son. Zardoz hung around with us for about a year in 2005 - our year without sleep. The brief life of Zardoz was full of challenges for us (and for him) thanks to his chromosomal disorder Trisomy18. In 2005 - 2008 Zardoz had a website; created with the intent of assisingt others sharing the same Trisomy 18 experience. I think that when Zardoz first came into our lives; I had never even heard of Trisomy 18, and I spent quite a bit of time searching for information on what to expect, would to do, and what our futures would hold. The hope was that someone else going through the initial shock of a Trisomy18-diagnosed baby would gain something from our experience too. Sadly, for reasons unknown to me; I never really completed the website after Zardoz's death, failed to maintain it, and even let the domain name expire. Last week while sorting out some rubbish at home, I stumbled across an archaic old fashioned hard drive. Surprisingly I managed to convince it to spin in to life for possibly the first time in 8 or more years (when exactly was a 7.6GB hard drive last considered to be state-of-the-art? It had Windows 98 still installed on it too). There I found some of the text from the Zardoz.com site, and quite a few photos. Lots of memories. So, in honour of Zardoz's tenth birthday (of January 2016); I thought I'd splash some of it up on this page. It was written 10 years ago and could probably benefit from some modification (editing), but it was written contemperaneously and shows my weird thoughts at the time. The text...
Welcome to Zardoz's trisomy 18 website - Pools of sorrow, waves of joy...
Zardoz was born on the 3rd of January 2005 - by caesarean section - in Perth, Western Australia. He has trisomy 18; and here begins a potentially long story...
If you've found this website through a search engine; the chances are you have (or someone you know has) just received some news that you didn't really want to hear. I've been there and done that. A trisomy 18 child will certainly change your life. It isn't the worst thing that can ever happen to you - though it may feel like it (trust me; that comes later). An infant with trisomy 18 is a lot of hard work - and may redefine your appreciation of the word 'fatigue'. Sleep-deprivation awaits. Hang in there; there are rewards! Rewards that you can't even imagine now.
I'll try hard to avoid turning this website into an epic. So, a bit of background... I guess that this website is being created to share some first-hand information about trisomy 18 - at least our experiences with it. I imagine that the only people finding this website will be people closely affected by it - and their relatives and closer friends. I'd never heard of it either, until a few days after the birth of Zardoz. There is possibly enough scientific information about trisomy 18 on the web if you're after facts about how and why chromosomes have come to be the way they are in trisomy 18 babies - albeit a challenging search. I won't add to it - it seems to be very much a 'luck of the draw' thing. It wasn't the end of my world - despite having felt that way at times. I am the father of Zardoz, and consequently this is written mostly from a father's perspective.
It certainly felt like our world ended on December 30 (2004) - it was then that we first realised that something might be seriously awry with our baby to be. Baby was about 36 weeks into his journey when a routine ultrasound picked up some anomalies. We had known that he was small - from previous ultrasound images - but suspected nothing serious. I would expect many parents have said the same things that we said during the pregnancy; "As long as it's a healthy baby...". Routine tests on December 30 th then suddenly became more serious as we were sent from specialist to specialist. Even to my untrained eye, there seemed to be grounds for some concern; the fuzzy images of the ultrasound revealed a fairly vacant area in the baby's skull - where ordinarily one might like to see a little more cerebellum. At this stage there were no certain answers available to the ' How, why, and what ' questions we were asking. The professors and doctors were very reassuring, while offering no guarantees. A decision was made to induce labour as soon as practicable – a few days after the New Year's break. We were sent off home to have a 'Happy New Year', and told to return to the hospital on January 3rd. I wouldn't expect anyone could have enjoyed those few days - they were entirely depressing, we were crushed and shattered. I was pretty angry with God (whether real or imaginary), but we tried to stay optimistic and positive. Tried...
Back in the hospital on the January 3rd; mum was prepped, and labour induced. Within an hour it became clear that the unborn baby was reacting badly - his heart rate was erratic. The room was soon suddenly flooded with concerned specialists. I remember that Maki and I had been sitting alone, just chatting for sometime, when the nurse came in to look at the read-outs of a monitor. Fairly soon I found myself up against the back of the room, behind the crowd 4 or 5 people deep. Without warning, a dozen or more concerned peole had swarmed around Maki's bed, and I just kept steeping back to allow more people in. A decision was quickly made for an emergency caesarean. Maki's bed was wheeled away, and I donned my paper theatre hat and gown. Soon after, a tiny baby boy was brought into the world. At just 1.7kg, he was indeed small and frail, and entirely unwilling to breath unassisted. He was to spend the next few days in in a Perspex box in the Special Care Nursery. That was fine with us. It sounds cold and callous now - even to me - but we had rejected him completely. A feeble, blue, brain-deficient and futureless child is not what we had ordered. On the positive side; the un-named baby was almost normal in his physical appearance. Paediatricians could spot an array of anomalies - his finger nails were a bit undersized, his ears a fraction small, his fists (middle-fingers particularly) were often clenched and he had 'rocker-bottom feet'. Nothing that was entirely obvious to either of us really - apart from his blue-purple colour. I will always think of a big bunch of ripe shiraz grapes - for that is exactly the colour he was when I first met him.
Three days into his stay, and after blood tests, more was revealed. Trisomy 18! - Never heard of it. The paediatrician took us aside with the bad news, and advised us that baby wouldn't be with us for long. I suppose I was meant to be shattered by that news, but I was strangely relieved. I thought, completely irrationally, (I'm embarrassed to write) that his imminent death might be a blessing.
Somewhere along the line; the baby we didn't want was named Zardoz. I had been planning on us having a girl (just a man's intuition), so all of my pre-chosen names were unceremoniously dispatched. The named appeared on the internet frequently (on a science site) and worked okay when written in Japanese. Naming him after my recently deceased father or an inspiring friend would have seemed too odd. "Hi, I've just named my feeble brain-damaged child after you".
So Zardoz he is.
Zardoz spent five days in hospital. He was kept alive with the aid of supplemental oxygen, and 2-hourly feeds through a naso-gastric tube. The future prospects for Zardoz were bleak. He had a heart murmur. Heart defects are often found in trisomy 18 patients - and he was in the habit of 'forgetting' to breath (apnoea events). His colour changes were frightening, fascinating, and impressively fast. He changed from his vibrant jaundiced yellow, to a most brilliant crimson, to an oxygen-starved deep blue-black in an instant. A decision was made to bring him home to die. Zardoz, at five days old, was now just 1.6kg. He was a tiny, frail and fragile boy. As the nurse helped load him into our car safety seat; I couldn't imagine him surviving the journey across town - he was far too feeble.
He defied the odds, and made it home. At this stage Zardoz didn't cry at all. He didn't have the strength. As Zardoz had no suckling instinct, naso-gastric tube feeds were required at 2-hourly intervals - throughout the day and night. The two-hourly regimen took a minimum of an hour of our time each feed (allowing the breast milk to filter through the very narrow tube - a very narrow tube was of necessity to fit up such tiny nostrils). Added to this was the time Maki had to spend expressing milk. The schedule was rather tiring.
As the weeks passed; Zardoz gained some strength, and gained some weight (slowly), and acquired his special crying skills - which he reserved for our dinner time and the hours 11:00pm to 5:30am. Zardoz gained weight at about 100g a week for the first few months - this rate seemed to decline as time went on. He stayed fairly healthy, but was often inconsolable and restless. 2005 is referred to as our year without sleep - very tiring. It was rare to get 3 hours of uninterrupted sleep in 2005.
Zardoz became more and more alert as the weeks went on - although he never mastered the complete control of his flailing arms and fingers. Somewhere along the path he learned to suckle from a bottle. Like a lot of the skills he learned; he seemed to progress rapidly and regress (inexplicably) just as quickly. He was only taking 20-30mL from the bottle for the most part, but it seemed to sooth and settle him nicely (most of the time).
At his inconsolable worst; nothing seemed to help. At times his discomfort levels seemed far too great. We often suspected constipation was the cause of his worst discomfort. Extra water, prune juice, Parachoc, glycerine, and coloxyl drops were all tried regularly - mostly to little avail. At his restless worst, during the nights, he was given morphine or chloral hydrate (or often a combination of both). This was pretty scary for us (morphine and chloral hydrate are both known to suppress breathing as a side-effect) and they were only employed in the most desperate of times. On no occasion did we actually see anything definitive in his response to morphine or chloral hydrate - for the most part we found they did nothing useful. Then we'd go off to bed and lie awake - listening to make sure he was still breathing.
Many nights; even Zardoz seemed completely frustrated with his lack of sleep. He often appeared to be desperately exhausted, but unable to sleep. He was certainly in discomfort, and we could never be sure that he wasn't in some sort of pain - where, why, what? Surprisingly, one thing that often seemed to sooth and settle him, was the holding of his hands - in fact restraining them. I'm reluctant to admit it; but I vehemently believe that Zardoz's flailing arms distracted him sufficiently enough to keep him awake. I'll be the first to say it sounds crazy... He would watch intently as his fingers wriggled and his hands swung past his line of sight. Unable to stop watching, even when the urge to sleep was almost overwhelming; he'd resort to crying at full capacity. At this point we would often grasp his hands firmly and hold them still, and out of his line of sight. Sometimes within seconds, sometimes within a few minutes, he would be well on his way to sleep and making his cute pre-sleep noises (possibly the thing I miss most now). This worked remarkably well, so many times. Beyond that, we just had morphine and chloral hydrate - neither of which I rate as very effective (at least not in the doses we were giving).
Although desperately fatigued, exhausted, and frustrated; things changed again for me (and for Maki) around the sixth of June 2005. Suddenly Zardoz was an entirely interactive child. He smiled when Maki played 'peek-a boo' with him. His smile was so wide and so genuine. Soon he would regularly smile when handed to me. As I walked in the door, on my arrival home from work, he put on his biggest beaming smile. Despite having been desperately tired for much of the year: everything now seemed completely worthwhile. He had moments of sheer joy and happiness in his life - and that smile was more than enough reward for me. Zardoz was now not just watching us as we moved around, but recognising us as individual people, and responding accordingly. I don't think that either of us had expected that in his lifetime.
I mentioned at the top of this page; this site is far from finished. There is so much more to add before the final paragraph, and I intend slotting bits in here and there as they come to mind.
Alas, the final paragraph will probably remain the final paragraph. That hurts me, but there's little I can do. While Zardoz was with us, I scoured the internet for information about trisomy-18 babies. I wanted to know how they lived, how long they lived, and how they died. There was no shortage of memorial sites showing birth dates and departure dates - 3 months and 2 days, 5 months and 8 days, two weeks... With the highs and lows Zardoz put us through, and the way he kept bouncing back from his severe apnoea events (having turned colours that no human should ever be), we began to believe that he could never die. He always bounced back. He had endured a flurry of apnoea events at about 3 or 4 months. It seemed that every Sunday he had a turn - so often that we dreaded Sundays. In one week in particular he had 3 or 4 very serious shut downs. 'Mouth-to-mouth' resuscitation was all that pulled him back from the brink. If ever anything could convince a person that first-aid courses were worthwhile; this did it for me. To bring a lifeless body back to a familiar shade of life and well-being is a life-changing event (for at least two persons). I have saved lives!
At November's end; we left Zardoz for three days and two nights respite care at a Red Cross centre. The location was nice, the facilities clean and modern, the staff were friendly and professional, and the patients seemed well catered for. We used our respite time wisely - catching up on much-needed sleep rather than going out and having dinner and drinks (a lesson well learnt from one past experience). When Maki retrieved our young man, he was a snotty-faced individual. He was off his food, and perhaps more irritable and restless than usual. I vividly remember returning home from work and commenting about our Zardoz's condition, "You can't possibly catch such a severe cold in just two days, can you?". On cue, two days later I was bed-ridden with a horribly sore throat and fairly messy sinuses. It knocked me about badly, and I was amazed by the resilience of Zardoz. We always expected that the first cold he suffered would overwhelm his system. A week later; he was well into a complete recovery, and I had picked up too. Some of Zardoz's finest days came then. He was cheerful, smiley and alert. Some of our favourite photos of him were taken just two days before he died. It was only after the event that we noticed, in the photos, that Zardoz had lost a fair amount of weight through his illness. He is visibly thinner in the face. Around midday on his final day, Zardoz had a totally unexpected serious seizure and a series of apnoea events. I was at work, and Maki spent the day nursing him. Upon my return home; Maki was unusually and visibly upset. Zardoz's breathing was very weak and of an unusual rhythm. He was unresponsive and floppy. He was still breathing unassisted, and naturally we were fully expecting another miraculous recovery - he always bounced back. At 7:45 pm (07 December 2005) Zardoz took his last breath.
Also (and maybe not interestingly) I found a letter to a friend on the same hard drive - a letter to advise of the arrival of the secret baby's arrival. 'tis a letter written before the full fatigue of a sleepless year had set in. A letter to Alex...
Let's start at 2004's December 31. Let's call it New Year's Eve. For the sake of the exercise I'll leap virtually, almost directly, using the shortest available route, straight to the point. New Year's Eve of 2004 rates, emotionally, as the lowest ebb for Maki and Mr Bond . As individuals we both tag it as the worst day of our lives. However, the tentative first steps prior to the plunge into the abyss of seething emotions, begins a day or two earlier. The gradual climb to the dizzying heights of blissful joy and anticipation, had snaked a calm and peaceful (secretive) course for the preceding months. A plunge into an abyss is often made much worse from dizzying heights. Up until, say, December 28; my life had been fantastic – nothing to complain about, carrying on in my daily hedonistic business and anticipating nothing extraordinary. Maki, Pochi, and Mr Bond had even been bush camping during the preceding days – let's call that Christmas.
Somewhere the bag must be opened, and the cat allowed its freedom. “Out you get, you mangy feral”. On, or around, December 28, Maki was about 36 weeks pregnant. Did you see that coming? Anyway, that's been our little secret – aside from a few select professionals, you are the first to know. Maki's parents still don't know. A normal healthy planned pregnancy that I had warmed to a little more with each passing day. I'd spent many a free moment selecting the ideal name for our darling girl – Kumiko (meaning forever beautiful child) being a favourite of mine. Alright, anyway, an anomaly was picked up on an ultrasound on December 28. Fear, panic, and some forced fake optimism. “What does it all mean?” More tests are scheduled at our local hospital for December 30. The baby is smallish, heartbeat is fine, body well formed. The doctors are reassuring – ‘We get more happy outcomes than unhappy ones”. “Just to be sure, we'd better send you to King Edward Memorial Hospital (a specialist women's hospital) for more accurate testing”. December 31, and King Edward 's news wasn't brilliant. Although dodgy, scratchy, and blurry; the ultrasound images revealed to even the most novice (me) that the baby had a large chunk of cerebellum missing. Maki and I were shunted from specialist to professor to paediatrician to midwife to neurologist as the decision to induce labour (on Monday the 3rd of January) was made. The experts figured that it would be of more benefit to get the baby out, and then test it, rather than leave the pregnancy run its course. A cheerful professor informed us that he could never be certain as to what kind of a future the baby might have, but in the main he always got more pleasant surprises than disappointing ones in his line of work. “You two go home, have a good weekend, and we'll see you on Monday afternoon to induce labour”. Have a good weekend??? New Year's Eve??? Could two people be more shattered? Terrified? Stunned? Maki and I had visions of surprising everyone with our beautiful bundle of joy, and had at many times said, “I don't care what it is, as long as it's healthy”. At that stage it was pretty obvious that our baby couldn't possibly be ‘normal' – not with that amount of brain missing, despite the assurances of doctors.
I doubt that I slept an hour from Friday through to Monday. A runaway brain doesn't slow for sleep. I pride myself on my rationality (maybe without just cause), but its new experience to have it completely evaporate without trace. Somewhere on that weekend, I swore my vengeance on God. I was to get him back for what he'd done… Funny thing for a person to do – when said person positions himself accepting his inability to prove the existence (or non-existence) of God. I tread carefully with God – not wanting to offend him if he does exist… I sincerely doubt that Maki and I could have suffered more (emotionally) that weekend. I took some comfort in the fact that Maki was to be induced for a natural birth – rather than being subject to a Caesarean, and exposed to those associated risks – particularly infection from ‘golden staph'. We struggled to maintain some normality and enjoy the last babyless (?) weekend together.
03 January at around 4:00 pm we checked Maki into hospital. A very nice hospital too – with birthing suites that rival, and surpass, even the very best 5 star hotel rooms that I've ever seen. That was comforting. Maki was induced and to be reviewed in 6 hours, with the labour expected to take 12 to 18 hours. She was induced, and made comfortable. I held her hand as she lay on the bed and we talked with the sound of the baby's heartbeat chugging along in the background. 2 or 3 hours passed, and without warning the room was suddenly filled with half a dozen people. Doctors, nurses, midwifes all crowding around Maki and the machines that go ‘ping'. Bond gets shunted to the rear, up against a wall, while everyone moves quickly and looks concerned. The baby's heartbeat is dangerously low and an emergency caesarean is the only course of action. Things go from where they were to worse. Maki's bed (with her on board) is hastily and unceremoniously rushed out the door and down the hall. She is headed for the operating theatre. I'm ushered to a lower floor, attired in a splendid set of green cotton overalls and sky blue paper hair net. I'm sat in front of a small television as Maki is prepared for surgery. I tried to make a deal with God - the same fellow I swore revenge upon – for Maki's safe deliverance. I think I offered him the baby in exchange. Soon I'm guided to the theatre and seated beside Maki again. I squeezed her hand as she lay on the table. Anaesthetists, nurses, midwives, a paediatrician all busy themselves. Maki is trembling severely – the anaesthetist advises me that this is a side effect of the epidural. Then comes a theatrical grand entry (with a flourish) by a smiling Asian man. He introduces himself as Doctor Tan and tells us that he will be performing our operation tonight. A warm round of applause should have erupted, but sadly, everyone just kept on going about their business. I continued to chat to Maki through the whole process – and 10 to 15 minutes later someone said “You have a boy”. My list of pretty girls names redundant! The paediatrician invited me over to meet the young alien creature. He was purple and wet like a collection freshly squashed shiraz skins. His facial features looked kind of normal – not the complete mutant I had expected. I must admit that my experience with new born babies was limited to just this one – a small reference group – and I wasn't completely confident about his looks. The doctors had to pump him full of oxygen to get some colour into him – he wasn't breathing on his own. I followed the baby down to a high dependency unit while Maki was being stitched up.
During my hour or so there, the doctors were puzzled. The youngster had to be resuscitated 2 or 3 times after failing to breathe and turning blue. At 1.7Kg, he wasn't a big baby and was more or less motionless, and didn't cry at all. I went back to Maki's room. Maki was still trembling from the epidural and had been delayed in the recovery ward because of low blood pressure complications. I told her that the baby looked fairly normal. The paediatrician had explained to me that the baby had undersized fingernails, shorter than average big toes, smallish ears and other worrying signs. None of these worrying signs were apparent to me, but I relayed the information to Maki. Reluctantly I left Maki to sleep. I arrived home at about 3:00am , made dinner, fed the dog, walked the dog, had my breakfast, and drove back to the hospital.
Maki was to remain in the hospital for a further 5 days – and I spent that time commuting with tiring regularity. The baby remained in a humidicrib. Maki and I were thoroughly depressed, but together. We couldn't relate the baby at all – no bonding. Maki held the baby as if it was a sensitive explosive device when handed to her. I tried to feign some sort of affection to keep the hospital staff on side. Truth be told, we were absolutely sick of hearing people (staff) saying ‘Congratulations' and ‘Isn't he beautiful!'. We were really depressed and teary. I must point out, that despite us being utterly sick of people congratulating us; all of the staff at the hospital were / are tremendous. Nurses: I could never successfully live with them – they're overpaid and argumentative, until you see them their natural environment. A Doctor Jeff Tompkins was our special champion. After about 3 or 4 days of testing the Dr Tompkins took us aside into a private room with what he described as some ‘unfortunate' news. The baby had been diagnosed with Trisomy 18 – a chromosomal disorder that nearly always results in a premature death, and a not very productive life. The ‘unfortunate' news was probably what we both wanted to hear – having already discussed, at length, the implications of raising a severely disabled child through to adulthood. Up to that point it had already been a mentally tortuous and tormented 9 days. I think I'd thought thoughts I never thought I could think. Maki too! The news that the baby wouldn't be with us for all that long suddenly changed things. Children with trisomy 18 have less than a 5% chance of surviving the first year, with many gone in the first month. What also helped to change my thought patterns was one simple, and obvious, sentence – ‘He's trying just as hard as he can to be the best baby that he can be'. The doctor basically said that there was nothing anyone could do – nothing that would be really useful to improve the baby's long term prognosis anyway. In effect, we were told that we‘d might as well take him home to enjoy while we had the chance, and to bring him back when he died. We went back to Maki's room.
It had be a major relief (read: massive crushing weight lifted off our shoulders) to find out the baby's deficiencies weren't necessarily caused by anything extraordinary done by us. A random fluke of nature had probably been the major cause, and carried by the infant since day one. For much of the week I had been expecting that the baby would never make it home, so now it was time to panic – his early arrival had left us ill prepared. Baby didn't even have a name – let alone a bed or clothing. The naming issue had been an agonising enough process on its own. Having had the gut feeling that we were to have a girl of the female variety, the baby's maleness had caught me unsuspecting. In the days immediately after his birth, we toyed with the names Saddam, or Osama, or even Neil , but we were now rational and longer despised our child. The next problem was that my most preferred choice of name for a male baby would have been Alexander – named after you, and quite fortuitously it was also my father's name. The next issue was simple: How honoured would you have been when I rang to tell you that I've named my mentally retarded kid after you? I've thought my way through that conversation once or twice. The final outcome is a boy named ‘Jandamarra Zardoz Bond – probably forever to be known as Zardoz. I'm sure there is half a story in that name selection too – but I will reserve it for a future date.
Zardoz is beside me in a clear Perspex hospital ‘tub' on a stainless trolley. He's fed through a gastro-nasal tube every two to three hours (even through the night) and now weighs about 1750 grams – after dropping down to about 1600 grams for the first week or two. He has learned to cry with some vigour – a special skill that he reserves only for the hours of 11:00pm to 05:30am . That has been our most interesting finish to 2004, and introduction to 2005. I do feel privileged to have made the acquaintance the little bloke, and am taking the opportunity to spend as much time as I can with him. He's alright.
02 August 2005 22 June 2005
Naso-gastric Feeding Time 2-3 hourly.
02 September 2005 26 August 2005 17 June 2005 17 August 2005 03 September 2005 14 January 2005 02 February 2005 04 September 2005 13 May 2005 09 June 2005