Saturday, 5 March 2011

Lucky Boy

Lucky Boy
November 1990

“eeeeeeeeahhhh ....eeeeeaaaaaaahhhhh” He cried his very first cry. And a rush of joy went up from the extended depths of my now big, baggy, empty belly, breaking into a broad beam as it reached my face. So little pain, and so quick and easy, compared with the first time. Cliche, but this time it was quite a joyous experience. Think maybe it was a gas-and-air enhanced high, though. Hated it the first time. Long, slow, backache labour. Went into a faint through lying on my back so long. Such a frightened little thing, first-time mother and all. When they rushed the oxygen tank in and pushed the mask hurriedly over my face I thought “Oh my god, I’m gonna die in childbirth!” I didn’t though. Just puked into a kidney dish. Then machinery started bleeping and there was suddenly lots of people and acitivity.‘Foetal’ distress’ they said and hurried around preparing to cut me and drag the baby out with forceps. Was awful and I felt really rough afterwards. For about eight months or so.

“You want to see the placenta?” said the midwife.

I had heard about the pernicious influence ‘new age’ ideas were having in the area of childbirth. No painkillers, indeed! I had even heard or read, can’t remember where, that eating the placenta could be part of this new (or old) set of practices. My answer to the midwife’s question was a quizzical and slightly horrified look suggesting that she may have asked me did I want fries with that.
“There’s something quite interesting about the cord....” she responded to the expression on my face. She held up the umbilical cord. And there it was with a perfectly tied knot about half-way down.

“There’s what we call a true knot in the cord....”

Apparently when he had been tumbling around in my tummy he had done a loop the loop through the cord. This can happen with cords that are unusually long. The knot ties sometimes before birth and sometimes it is as a result of the loop being pulled off some part of the babies body, during the birth, where it had previously coiled around. Often the neck. True knots occur in approximately 1% of pregnancies and about 6% result in ‘foetal loss’ -the death of the baby. This can be due to strangulation or compression of the umbilical cord where the knot becomes tight and the cord is no longer able to function.
“He’s a very lucky boy” said the midwife.

I was by now too engrossed in cuddling this surprisingly heavy, chubby, squirming bundle of babyflesh wrapped in a rather unbecoming orange NHS blanket, to take in anything other than the word ‘lucky’, and that only vaguely, or any implications. It was just now pulling the statistics and consequences off the ‘net that I realised the import and nodded in knowing and serious agreement with the midwife -11 years later. But for then, the ease and the speed of the birth made a happy and relaxed atmosphere in the delivery room.

“Have you chosen a name for him ?”
“Oh that’s nice, unusual”
The name had been culled from a congratulatory telegram we received when we got married, I explained its inspiration. It was the name of some unknown cousin in Ireland. Ronan was the other contender on the telegram, though this was rejected for being too unusual and maybe inviting peer-ridicule later in his life. Retrospectively, that was a very lucky thing because it might look as if we were empty-headed parents slavishly naming our child after the pop-star, Ronan Keating.

With Lorcan, it might just instead, look as if we had chosen a name with some profound meaning attached to it. But for me it was no more than the image of some rugged, raven-haired Irishman standing heroically in the Irish windswept landscape. A bit Heathcliffe of Yorkshire like. Lorcan, meaning silent & fierce. Turned out he was both but not in the Heathcliffe sense. I cuddled him some more, saying “hello” in a ridiculous ga-ga voice. I was bonding with him already. This time it would be different and happy.
I was back at home with him the same day. How easy it had all been. I was a little nervous about feeding him. I had opted for the bottle straight away this time. With the first child trying to breastfeed had been a complete disaster on account of having no breasts. When the milk finally came in, though, it was like having two bricks for breasts. There had been no friendly nurses on the ward to help and support and encourage either. Only critical frowns when I failed. And no it didn’t come naturally. I wanted to get off to a better emotional start with baby 2, so the bottle it was.

The first couple of feeds went ok from what I can remember. Then somewhere along the line, I began to feel uncomfortable and concerned about something. The midwife came the next day to check on mother and baby, weighing baby in a tea-towel. How quaint. By the next day when the midwife came back I mentioned that he was puking bits of milk back and that he seemed a bit sleepy. Quite normal she thought, but we’ll see how he is tomorrow. The next day I mentioned again the puking and now it was yellow bile. She didn’t like the look of him nor the sound of the symptoms but wasn’t quite sure what it was. She elected, wisely to call the doctor.

Coincidentally and even quainter, it was the doctor who I used to see when I was a small child. He once gave me some Smarties to cure a headache I had. Worked a treat. I reminded him of this in pleasant and polite, light-hearted conversation and gentle laughter while he examined my new baby.
“You must take him straight to the Casualty Department” he said gravely.I wasn’t expecting that.
“Now..?” I murmured faintly, from somewhere out in orbit.
“Yes. Pack him some things, I will give you a letter to take...”
I did as instructed obediently as I was now floundering in the land, Unknown. The next thing I can remember is sitting in the back of the car with him dressed in his best woollies and wrapped in a blanket. Somehow I thought that if I dressed him nicely it would make it ok. I looked at the small brown sealed envelope the doctor had given me to give to the hospital. It was only a small envelope. It can’t be much I thought to myself, the thought being unjustified by any knowledge I possessed of such a situation, which was nil.

I had to sit in a wheelchair with him in my arms, for safety reasons, while we were transported to a baby ward. I think I made some joke about it. We were shown into a room with a cot and two chairs in it. The nurses took details of the birth, weighed him, head circumference, last fed, nappies etc all matter-of-factly. I held him over my shoulder, where he slept. Was that a troubled expression on his face? How much did he know? What was he feeling? Did he have pain? Surely he would cry if he did. Or was he so dopey that he couldn’t cry out. Was he suffering inside? How alive was he?

The nurses left us for a while and I looked out of the window. It was November and grey. The room was grey. The cot had grey metal bars. It looked like it might snow outside. I shuddered at the coldness of everything but I was chilled most of all inside. He should be at home with his baby blues and sunny yellows. More nurses. This time they brought a bottle of milk to try and get him to feed. But he wouldn’t, he was too dopey. The senior nurse frowned “Hmmm, I see”.

Another nurse asked “Does mum want a bed in here or in the parents’ quarters ?” “A bed!?” Now I was really stunned. I was sure we were only here for the afternoon and that we would all be back at home, very soon.
A bed was brought and parked, blanketless, in the corner of the room. Husband was now gone home to take care of the older child. Older child! He was still but a baby himself, 22 months young. My eyes scanned the room. A grey and empty space. Life had just been turned completely upside down and inside out in the time it might take for someone to be zapped Star Trek-transporter style from the safety of the mother ship to an alien environment. That’s exactly how it felt.

Outside the light was fading. Grey clouds were storming angrily across the darkening sky. I turned away from the cold glass of the window and wondered if my baby was warm enough. There he lay in the cot, covered by a couple of light blankets, asleep and oblivious. Oh, my baby.

A nurse came in with another bottle. He was still sleepy and resisted all her attempts at feeding him also. She left quietly, saying we would try again later. A few minutes later she came back with some blankets for me and told me about the parents’ room where I could get a hot drink. But I didn’t want to leave him. Though he wasn’t a small baby, 7lbs 12oz at birth in fact, right now he was so vulnerable. He was clearly ill but no-one knew what with. I pulled a chair up next to his cot and just sat watching him sleep. It was getting late and all the lights were dimmed on the ward outside. Another nurse crept in with another bottle. Still no luck. I was tired and still bleeding myself and fell asleep against the cot.

I woke early next morning with lines down my brow where the cot bars had been pressed against my face. But it wasn’t funny. The nurses came in to weigh him. He had lost weight. They took some blood and a urine sample from him. One nurse told me I could go to the hospital restaurant at the other end of the building to get something to eat but the midwife who was supposed to see me routinely at home had come to the hospital and told the nurse crossly “This mother has just given birth, she mustn’t walk that far!”. It was a bit of an embarrassing scene. The midwife checked the stitches where I had torn and decided to take them out. Ouch.

The day passed again with half-failed feeds and the night crawled by with me laying fully-clothed on the bed not sleeping and more two-hourly feeds that weren’t. The next morning he was weighed and he had lost weight again. He should have been gaining it by now. He should have been well on his way up the growth path that leads to bouncing baby boy to toddler to schoolboy to football team.... But instead, just this silent deterioration.

One day after so many weighings and losses and no answers or causes, I phoned my mum crying and incredulous “He can’t die!”. I felt so alone, myself. There was no-one here to hug and hold me, comfort me in my distress. Though he came to visit, my husband didn’t like hospitals so I had to be the strong one and the nurses needed practical information about the contents of nappies and how feeds had gone or not gone. In any case, he was needed at home to care for the other child. I wondered what my other baby was feeling about this sudden drama.

That evening I decided to chance a break in the parent’s room. I could really use a nice, warm, comforting plastic cup of watery Hot Chocolate. I let the nurses know where I was going in case I was needed suddenly. The corridor to the heavy double doors beyond which was the attempt to provide some home comfort - the parent’s lounge, was lined with little rooms each with a grey metal cot. Two of them were occupied by babies who had bandages wrapped around their little heads from which a tube connected them to machinery and drips. See, it could have been alot worse I told myself. We were lucky he wasn’t that ill.

In the lounge were a couple of parents, drinking coffee, having a smoke, watching TV, being brave. I cupped my hands around my Hot Chocolate and hugged it to me. It was warm and delicious. This night I would even climb under the blankets. But still I kept my clothes on. In an act of denial, I had so far refused to have my pyjamas brought in. Stupid really.

The next morning more weight loss. Fortunately, a group of doctors in white coats came and one of them explained to me and the students gathered, inquisitively, around him that he thought he had found what the problem was. E-coli bacterium had been found in my baby’s urine, but not in his blood, which suggested it had got there through reflux up the urethra, otherwise he would have had septicemia as well. Luckily he didn’t.

The doctor arranged for some antibiotic treatment for him. It had to be given intravenously to ensure the antibiotics got directly into the bloodstream. He explained to me that with such young babies the only accessible veins were in the head. My husband arrived to visit just then and I told him the ‘good’ news but he turned pale when I told him further that the treatment involved a needle in the head. We were sent away to get coffee as the doctors swept in to insert the needle. We heard the screams while we were still in the corridor. A nurse came out and saw us looking somewhere between anxious and horrified. She tried to reassure us telling us that on the first attempt the vein had been missed but now it was done and ok to go back in.

And there my baby lay with a bandage round his little head just like the others. Next a dripstand with the bag of antibiotic liquid was wheeled in and the long tube from the bag was attached to the needle in his head. I successfully held back some tears which were wobbling on the rims of my eyes and asked my husband to bring some suitable babysuits that wouldn’t involve too much wrestling to fasten them and no over-the-head ones, obviously. This was going to be fun. To change his clothing, his nappy or to feed him I had to carry him over to the bed in one arm and manoeuvre the dripstand with the other, being nervously careful not to rip the needle out of his head by some terrible accident.

Also I had to get regular urine samples from him using specially designed bags with a hole in to put his willy in. Now it was just watching and waiting. But the samples kept coming back from the lab still with bugs in. The group of doctors were on their rounds again, rows of flapping white coats sweeping down the grey corridor like the crest of a wave. The consultant eyed my baby’s urine test results, thoughtfully. “Hmmmm...” The bugs still in his urine could be from environmental contamination, from the air or his skin he told me. But there was a note of doubt in his voice.
“How will we know the antibiotics are working, then ?” I asked. He asked the nurse if such-and-such a test had been done. She looked at him blankly.

“We need to get a super-sterile urine sample” he explained to the student doctors, the nurse and me. There was some discussion between the consultant and his pupils. I think he was asking them, for educational purposes, how this might be achieved.

He told me that they would have to place an especially long needle straight through my baby’s skin and into the bladder to draw a perfectly sterile sample. This was organised straight away. They took him off to a special room and said it was best if I wasn’t there because it wasn’t very pleasant. I heard him screaming very badly. This time I did cry. A mother is supposed to protect her child from pain and I felt that somehow I was to blame for asking the question. But apparently it was necessary.

The doctor also organised a kidney scan to see how the kidneys were working and to make sure there was no damage. ‘Kidney damage!?’ I thought. This just got worse. Still, I supposed, he was lucky he was alive.

So baby’s first walk out was in a hospital pram, from the ward, through the hospital corridors to the Department of Nuclear Medicine. It was quite surreal being surrounded by those yellow and black cautionary trifoil symbols warning of radiation as I thought back to the happy day he had been born so relatively naturally, so easily. It seemed such an inappropriate environment for a newborn baby. But so is a coffin. I kept being overwhelmed by these feelings of great seriousness. Here I was holding my baby having his kidneys scanned for damage, all the cutesy cards in pastel shades. the flowers and fluffy toys congratulating the birth were only a few miles away at home, a few days ago, but now a world and an eon away.

Two kidney shaped areas of brightly coloured dots began to appear on a computer screen as the dye injected into him flowed its way through his urinary system.
“Ha!” exclaimed the technician. “50/50, that’s unusual” Though the results aren’t perfectly accurate, it was more usual to find one kidney working slightly more than the other. Thankfully, there was no damage.
Back on the ward we were moved out from the little room and onto the open ward. The urine sample had been clear. We just had to wait a few more days for a good dose of the antibiotics to get into his system to do their curative and preventative work, for him to start feeding properly and regularly and to become more alert.

There were four cots to each bay on the ward and across from us was a lady who had been here so long she had a rocking chair brought in. She sat most of the day with her baby on her lap, rocking gently. He had some serious condition which meant although he was technically old enough he couldn’t take solid food and had to be fed through a tube. And there was some brain damage. There was a constant liquidy, snorting noise as he breathed which made my stomach turn at first but I learned to love that noise. Often in the night the machinery he was wired up to would bleep and nurses would come rushing in.

Though there was no sleeping anyway, one night, when the worst was passed for us, I felt strangely restless and tearful and wandered down the dimly lit corridor like a ghost, lost and floating. “What are you doing?” the Sister on duty that night, asked. “ I don’t know..” I said and wandered back to bed. I lay awake staring and watched the dark blue night turn to grey morning.
Finally, after two weeks we were discharged from the hospital with a supply of antibiotic medicine to prevent re-infection, a series of appointments to attend the hospital for check-ups and enough anxiousness to last for months. I said goodbye to the lady across from us and wondered sadly how many parents and children she had seen come and go while she and her baby stayed there rocking but going nowhere.

A nurse appeared to say goodbye to us. She peeped in the baby blanket I had him wrapped in “Lucky boy” she said stroking his cheek with her finger.


September 1992

“We’re not doing the development check now until they are two” explained the health visitor on the phone.
“So why’s it called an 18mth development check, then ? Look, there’s something not right with my son. When I first called at 18mths you told me the check was now at 22mths and now you tell me its 24months. He’s not talking, its more than that, I don’t know what it is.... “ I was a bit tearful and frustrated by now.

Admitting there was something wrong was a hard enough thing to do but no-one was taking me seriously. I had concerns about him at 18 months and they just grew and grew. My husband was unconcerned “Leave him alone, he’s alright” . My mother-in-law considered herself something of a child-care expert, also. A good fertile Irish Catholic mother of several children. Her diagnosis was that he was just a late talker and that he was ‘alright’.
“We’re not doing the check now until two years old” the health visitor repeated.
“Look, I’m not happy about it. There is definitely something wrong but I can’t put my finger on what it is. He’s not talking and something else...I don’t know... If we just keep leaving it he’s going to be even further behind. I want somebody to come out and I want somebody to come out, NOW!”
“OK, who’s your health visitor ?” She enquired, recognising that I was seriously worried.
“Mr Desai” I answered, sadly triumphant.
A couple of weeks later Mr Desai came to visit us at home. He listened to my concerns and observed Lorcan not playing with me.
“It’s not the fact that he’s not talking, it’s something deeper, ...If I get down to play with him he just moves away ...and that’s how they learn language isn’t it, by playing with people ? He doesn’t even know his own name. He doesn’t respond when I call him ...”

It was hard saying all this -there’s something wrong with my child. It was hard thinking he had some kind of aversion to me, too. Mr Desai understood and saw everything that I said. He said he would make a referral for Lorcan to see the Clinical Psychologist at the Child Development Centre. A couple of weeks later we had the appointment.

The doctor got some nice brightly-coloured toys and bricks out on the table and tried to get Lorcan’s attention. I knew well from my first child and my friends’ children and the Mother and Toddler group we attended that bright reds and yellows and blues and these standard kiddy toys never fail to get a child’s attention and curiosity and playfulness. But not Lorcan. He moved away and chose to skirt the furthest perimeter of the room pulling the cushions off the chairs and banging the glass doors of the bookcase. Lorcan took refuge on my lap away from the doctor’s attempts to interact with him but not in a cuddling mother sense, more like one might hide in a cupboard.
“There’s something called autism...” The doctor explained. I didn’t have a clue what it was but got a ‘shit, that sounds serious’ feeling about it.
“Six week assessment...Child Development Centre...brain scan...EEG...blood samples” he burbled on. After the appointment, as I strapped Lorcan back in the child seat in the car something serious and heavy lay in my stomach. I felt like I had taken one child in and brought a different one out.
The letters and appointment cards came. The brain scan and the blood tests were all normal. What did that mean? The paediatrician at the hospital explained at the final diagnostic appointment. 10th November 1992 a few days short of his 2nd birthday. The tests showed that it was not something other than autism.
“You do understand I am confirming a diagnosis of Autism”, she pressed her point.
“Yes, I do. I know.”
“You’re taking it very well, then”. What other way was there to take it. I knew it meant there were things that needed to be done for him.
“Yes..” she continued “..he’s lucky to have an early diagnosis ..early intervention is a good thing.”

7 November 2001

One of my eyelids was thrown violently open by the sound of persistent and assertive knocking on the front door which told me that the caller had a clear and urgent purpose. I looked at the red digits burning on the clock -7.05am -too early for it to be the children's father coming to collect them. Far, far too early.

I struggled through a mental list of who it could be and why at the same time as trying to stumble out of bed on sleepy legs. I drew back the corner of the curtain and saw a dark blue volvo saloon car which looked like it was occupied by a family - driver, child seatbelted in the rear seat and presumably the passenger knocking on my door.

With sleep still blurring my eyes and confusing my mind that's all I could understand of this puzzling disturbance. Then the driver of the car caught sight of me squinting through the curtains and got out to catch my attention and beckon me to the door. 'His clothes match the car -dark blue' I thought vacantly until I noticed the characteristic white squares accompanied by the word POLICE on his jumper.

Still stupid with sleep, I thought they couldn’t be here on official or urgent business because they weren’t in a white police car with a blue flashing light. A conclusion drawn, also, from watching too much 'The Bill'. So I was still in no great hurry to see what they wanted. In a more wakened state my brain reprocessed the information it had received in the last few moments and with each step down the stairs came to a fuller appreciation of what might be going on, until, reaching the bottom stair I drew in a deep breath and swallowed the full realisation which sank heavily into my belly. I opened the door with my hand covering my open mouth.
"Where is he?" I asked tentatively. With my eyes now fully focused I recognised the child in the back of the police car. Without waiting for the policeman to say anything, as I am so used to explaining him and defending myself against judgmental assumptions which often accompany having a child with autism, I launched into it...
"He's autistic. It's not negligence, you know. See this bunch of keys here, doors, windows, inside doors, front door, back door, side gate..." I stared at the bunch of keys in my hand and tried to add the fact that everything was locked with the fact that Lorcan was obviously not on the inside of the locked doors and windows. And it didn’t add up.
"I sleep with them under my pillow or hide them. Every night. How the hell did he get out? Where was he?" The policeman seemed quite surly "I'm not here to tell you off for negligence I'm here because the child was on the road scooting around the roundabout dressed like that in this weather at this hour and I'm here to establish where he lives and get him back there...I need to take a few details."

"Lorcan's date of birth? 14.11.90. He almost wasn't 11" I answered, flat with relief. The policeman's tone began to soften as he took all the details and was given a few more about Lorcan's autism.
“He’s lucky we were passing. We followed him round the roundabout several times in the car. He wasn’t even aware of the car. It’s very dangerous.”
“I know” I said. I was asked to sign the incident report in the PC’s notebook which I duly did standing there with my scruffy hair and fluffy bedsocks and garish cardigan pulled over an old t-shirt.
"Payin' outsi’" Lorcan simply said in innocent and broken words from his innocent and broken brain.

November 2001 II

One of my eyelids was thrown violently open by the sound of persistent and assertive knocking on the front door. I drew back the corner of the curtain and saw a police car parked on the road in front of my house. Oh no not again. This time there was no Lorcan in the back of the car. Oh my God, Oh my God. That feeling again as I descended the stairs with each step the information in my brain sinking heavier and heavier to the bottom of my stomach. I opened the door to the police officer who was talking into his radio.
“Where is he?”
“Have you lost someone?” he asked. I felt very sick. I went to look in the kitchen at the back door. I saw his brother’s bike was missing and the back gate was open. I felt very very sick. I thought of it under a lorry or car or something.
“A boy on a bike?” I couldn’t speak in full sentences.
“What colour’s the bike?” he asked
“Blue” was he asking that because it was unrecognisable, I panicked in my head. I felt very very very sick. He spoke some more into his radio.
“His Dad’s on his way to collect him. He was picked up by a police van from the flyover bridge. He’s ok”
I sank into the chair, staring, shocked, relieved, frightened. The flyover bridge took a busy bypass over the main river through the town about a couple of miles away. Lucky it was a Sunday morning.

Just as scary was the fact that a few weeks earlier he had brought home from school a piece of paper with some symbols on including the symbol for bicycle, water and splash. He had made it on the computer at school using a special system of symbols designed to aid communication.

Lucky he was seen and stopped before he enacted that. Lucky. Lucky. Lucky boy. Maybe he wouldn’t have.

There was another occasion when I noticed him missing and alerted police - that time was the worst ordeal. Sniffer dogs and helicopter were on standby.

I called an emergency meeting at school and we all shared ideas on how to minimise the risks he poses to himself through his ‘lack of understanding of danger’ as it is nicely put, a common problem with autism.

Autism itself is quite rare. About 500,000 people in the UK have some form of autism. His school is a special one for autistic children so they have expertise and they love him. He is ‘lucky’ to be there. One figure quoted is that there are approximately 3000 places in schools specially for autism for 76,000 autistic children. Adult services are scarce too.

And when I’m no longer around to keep him safe the other 362 days of the year, with a bit of luck....

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