Letter to Louis Page 6

  *

  We leave the clinic feeling worried, Greg and I. I have a gnawing feeling in my stomach, a twist in my heart as we meet Dr Thompson in the corridor. He holds his hand above your head, wiggles his fingers and then moves his index finger from side to side. You are following with your eyes, keeping up with his finger, and then you break into a smile. A big, bright, wide smile.

  ‘There’s nothing wrong with this one.’

  Dr Thompson looks pleased. He strides off with a grin on his face and my heart lifts again.

  We decide to go on a holiday.

  ‘Let’s try and recover from everything that’s happened in the last six months; do what the nurse told us, forget about the hospital.’

  We choose a pretty stone cottage painted white in the heart of the Cairngorms; it is nestled beneath hills in a forested glen. We joke together as we set off; we call this holiday our honeymoon.

  The cottage is situated on the edge of a hamlet and its back garden has a monkey puzzle tree and a leaning Scots pine. The garden backs onto a conifer wood and I notice there are deer tracks pressed into the soft moss ground when I open the back door early this morning. At the front of the house is a small footpath that winds its way up to the left and around a pretty marsh pond and then the path winds down again along the other side of the water’s edge. This pond with a backdrop of silver birch trees is our view from the cottage’s kitchen window and on this bright March morning it is showing the first signs of spring in its reeds.

  Earlier this morning the sun had streamed in through our bedroom window and Greg and I had smiled at each other at our good fortune with the weather. It is beautiful and peaceful here; maybe at last we will start to recover.

  Now Greg has gone for a walk through the woods and I am sitting on a chair in the kitchen with you on my lap. I’ve spread a large plastic sheet across the kitchen floor in case you vomit after I’ve fed you. To my horror you vomit more than I’ve ever seen you vomit before. I try feeding you again. I warm the milk, hold you in the crook of my arm, place the bottle to your lips. You are hungry. You keep your eyes closed and drink big gulps. I hear you swallow air and instantly stop, tilt you forwards with your chin cupped in my hand, and as I pat your back you vomit again. Everything. It splatters across the sheet. Thank goodness I brought this with me.

  I wonder what to do as I comfort you writhing in my arms. My chair is facing the kitchen window and I stare out of it feeling anxious. I try feeding you one more time and you vomit again violently, so I find the number in the visitor book and pick up the telephone on the sideboard and call the local doctor. I arrange to be seen at his surgery in the next village this afternoon.

  The doctor is bad tempered and short with me.

  ‘All babies vomit.’

  ‘But he’s vomiting everything.’

  ‘Oh, it can look like that but it won’t be so. He will be getting what he needs. He looks fine. Take him home.’

  *

  We go back to the holiday home. You vomit your next feed and your next. You seem hot; your breathing is laboured.

  I barely dare to go to sleep that night in case you vomit in your sleep. I lay your pram bed next to our bed and lie looking down at you through the night.

  We are exhausted and worried. We are always exhausted and worried these days. Is this any different?

  The next day I sit in the kitchen feeding you and vomit spurts onto the floor again. I get down on the floor, get out my plastic syringe and suck up all the vomit. I squirt it back into the hundred-millilitre bottle: ninety-five millilitres.

  By the evening Greg and I are arguing with each other in desperation. At eleven I call Len.

  ‘Look at Louis’s chest. How is he breathing?’

  I open your babygro to look. Your breathing is laboured. Your chest pulls right in and up under your rib cage.

  ‘I don’t care if you have to get that doctor out of bed, he has to look at Louis again.’

  I call the doctor. He sounds grumpy, sighing when I tell him my uncle’s a doctor and is insisting that he sees you.

  ‘Come down to the surgery,’ he says.

  *

  The doctor is standing outside when we arrive. He looks at you and calls an ambulance.

  ‘You need to be taken to Inverness hospital.’

  You are wrapped in a blanket in my arms. The door of the ambulance closes and the doctor disappears from my view. I notice from this angle his coat is covering his pyjamas, poking out at the bottom. His face has a worn expression. I suppose it is one in the morning now.

  The oxygen mask is over your face and your chest still pulls sharply under your ribs. I feel the movement of the vehicle and I hold you tight. I suddenly realise the ambulance man is talking to me.

  ‘How old is your son?’

  ‘Six months,’ I whisper, say nothing more.

  ‘Ah, so is my son; he’s six months and massive. Will eat anything you put in front of him. He sits there banging his spoon wanting more and more …’

  The doctors are worried. They think you have meningitis. You need a lumbar puncture. I’m asked to leave the room. I feel uncertain. Should I leave?

  ‘Is it right to leave?’

  ‘It is for the best.’

  ‘Really, is it right to leave my baby?’

  ‘Yes, or they associate the pain that they experience with you.’

  I feel confused about this. Should I leave you all alone when you are to have things done to you?

  *

  I hear your scream.

  You scream an agonising, terrified, desperate scream. I feel sick to the bone. The door opens. The doctor’s face is blanched.

  ‘It didn’t work. He fought me off. I’ve never known any baby react like that.’

  *

  I hold you tight. I vow I will never ever leave you like that again.

  *

  The nurses find us amusing. We are known as the honeymoon couple spending it in Inverness hospital. They are kind and concerned for you lying naked in an incubator in an oxygen tent. You’re on a drip for dehydration and have an infection but the meningitis scare is over.

  This morning a new nurse has arrived with a suction tube in her hand. She sticks it down your nose and explains she is sucking up mucus out of your stomach. Her face has a look of intense enjoyment as she performs the task. As she finishes she turns her head towards me.

  ‘Look at him. That’s an apology, that is!’

  She walks away shaking her head, laughing to herself. What does she mean? Then I realise she was pointing at your penis. I’d like to punch that nurse. I don’t but when I see her my anger boils.

  It’s a custom in Glasgow to throw money into a pram or a pushchair if you see a new baby go by. People slow their pace to look at you, to check you out. You are so tiny but you don’t look like an innocent baby: you look like a little old man.

  ‘How can that be?’ you can tell they are thinking, turning their heads, nudging their partners.

  And some that wander the streets speedily in pairs, with legs you could snap and straggled hair, suddenly stop, turn and stare.

  ‘Hey, look at that.’

  ‘Where?’

  ‘There. Over there.’

  ‘It’s a fella!’

  ‘A fella?’

  ‘Yes, that’s a wee fella.’

  ‘Hey, you’ve got a wee fella in there.’

  The next clinic visit shows you are still losing weight.

  ‘The chart shows that Louis’s head and body are keeping in line with the centile but his weight is continuing to fall. We need to keep a close eye.’

  ‘What does this mean?’

  ‘We’re not sure right now. He’s failing to thrive. He might catch up again when we have tackled all his reflux and feeding problems. We’re uncertain how much this is impacting on his development. We will just have to wait and see.’

  ‘Are you worried about Louis?’

  ‘Your son will go to a normal school, that’s all
I can say.’

  ONE

  You are still tiny. You have startled blue eyes, a peaky face and spiky wispy blond hair. You curl up your fingers and smile brightly at me as I coo and then sometimes you look a bit puzzled. You are perfect in my eyes even though we have worries.

  You are one year old and your weight has not caught up yet. You weigh 5.9 kilograms, that’s half the weight of an average child your age. I dress you each morning and my favourite outfit is a soft pair of tartan blue and yellow trousers, and a sweet little jumper knitted especially for you by my cousin Anna. And I carry you everywhere. I’ve bought a baby papoose that straps easily around my waist and you snuggle down in a hump on my chest, or else I hitch you around my waist. You are happy in these positions most of the time, being warm and close to me, looking around, and it means I can do practical chores with you held there, in between all of the drawn-out feeding.

  I’ve arranged to meet Greg at twelve to walk back to our flat together. He’s taken you for a walk around Kelvingrove Park while I’ve come here to Waterstones on Sauchiehall Street to do some research. I’ve wanted to do this for a while but it has been difficult to find a time when I can be away from you for long. I want to know exactly what pre-eclampsia is. I’ve heard the word used by the doctors. I’ve been told I had it. But I don’t understand what it actually is. I realise it has something to do with my blood pressure being dangerously high, but nothing more. What is it? What causes it? I want to know because I want to try for another baby; I want to know if it could happen again.

  I can’t find anything in my general pregnancy book at home or on the shelves downstairs in the bookshop under ‘Mother and Baby’ so I climb the stairs to the third floor and look around for ‘Obstetrics’; I find it within the Medical section. I start looking through the maternal medicine books and I find one entitled Myles Textbook for Midwives. I open it and find a section called ‘Pre-eclampsia and hypertension in pregnancy’. It discusses how pre-eclampsia is one of the most common and serious complications in pregnancy, that it is one of the main conditions that a midwife should be looking out for when conducting an antenatal check. It states that pre-eclampsia is a combination of high blood pressure over 140/90 and one plus of protein in the urine. This is why a midwife should always check both the blood pressure and urine on each visit.

  I’m frozen in my seat.

  The book lists further symptoms for the mother: oedema – the sudden swelling of the feet, ankles, face and hands; severe headaches; visual problems such as blurred vision and flashing lights; pain just below the ribs; feeling very unwell. And the main signs in the foetus are not growing so well and reduced movements.

  I’m stunned.

  I hadn’t appreciated until this moment that I had been suffering from almost all of the main symptoms of pre-eclampsia.

  It’s coming up to twelve so I leave the bookshop and walk along the main street away from the city centre, cross over the busy bypass by bridge and cut down a side street to reach the gate at the edge of the park near a terrace of offices. There’s Greg standing waiting by the entrance while you are lying back in the three-wheeler pushchair with your eyes closed. You are dressed in an all-in-one snowsuit and nestled into the sheepskin rug that we’ve taken to putting in the pushchair’s base, and over your body there’s a blanket.

  Greg looks pleased to see me.

  ‘Hey, you wouldn’t believe who I met in the park with Louis.’

  ‘No, tell me, who?’

  ‘Remember that Alsatian that I told you about? The one that shot into the road in front of the car with no warning, when I was on the way to see you and Louis up at the hospital? When the police were called? I was convinced it had died; it was bleeding all over the road. Well, we turned the corner by the pond and I saw it, the Alsatian. I couldn’t believe it. I rushed up to the owner. “Hey do you remember me? I’m the man who knocked over your dog this time last year. It’s alive, that’s great to see.” But the woman didn’t look pleased, she just pulled its lead and walked away.’

  ‘Greg, are you kidding me? She’s not going to have been happy to be reminded of that by you.’

  And poor Greg looks puzzled; he can’t understand why. When Greg first told me about the Alsatian I was still in deep trauma; it barely registered then, but I realise now how awful that must have been for him, both of those incidents together. His joyful reaction today is to turn these events into happy endings, and they are, but for the dog owner the memory of what happened is still traumatic. The Alsatian’s alive and we are out here in the park, us three, as a family. The journey so far has not been smooth sailing but we are hopeful it will all start getting easier.

  Janet – Greg’s mother, your grandmother – has come to visit. You’re fourteen months old now and this is the first time she has met you. She looks at you in your bouncing chair. She stares down at you from her seat in the kitchen; down at you in your blue canvas chair on the floor.

  ‘There’s something not quite right about him. He’s not like any baby I’ve come across before.’

  Janet has had four babies of her own so she should know. But she’s become an alcoholic so I try not to take any notice of what she says as she gazes at you.

  The taxi stops at the lights, we are heading to the hospital for another of those fortnightly clinic visits. We’ve been making this trip for over a year now. The cab driver hasn’t stopped talking since we got in.

  ‘As long as they’re okay, that’s what matters. It doesn’t matter what sex they are and all of that nonsense, as long as they’re okay that’s the main thing.’

  But what if they’re not?

  ‘My brother, now he was born early you know – only a pound he was too. You should see him now, he’s six foot and there’s absolutely nothing wrong with him.’

  People keep telling me a similar story. So many that I’ve checked with the doctors.

  ‘Doctor, do you mind my asking – can a one pound baby survive?’

  ‘No. Not that light. There are those that weigh a little bit more who may survive. It’s the gestation that matters. Twenty-three weeks is the earliest and those will most likely face serious disabilities if they do.’

  *

  I stay silent in the taxi.

  *

  You can’t stand, you can’t crawl, and you can’t sit up unaided. You can’t roll over; you find it difficult to lift your head. You are fifteen months old and we are heading up in the lift to the clinic again. I’ve decided to be direct. I can feel the swelling in my belly – you are going to have a little brother or sister. No one knows about it yet, I’ve not reached twelve weeks, but it is suddenly dawning on me that things are not improving with you: things are getting worse week by week.

  ‘Dr Nook, does my son have cerebral palsy?’

  ‘I don’t find that a helpful term.’

  ‘Well, does he have it or not?’

  ‘It is now apparent that Louis will have some movement difficulties. How mild or severe is difficult to tell right now. We’ll just have to wait and see.’

  You are always crying, always agitated, writhing around, but it is hardly surprising as you are covered in eczema. Like lichen on a stone, it has spread across your forehead, over your torso and encased the creases in your arms and legs. No wonder you are in a constant state of agitation and distress. I lie close to you on the bed and try to distract you by stroking your body ever so lightly, massaging your scalp so that you enter a trance, find release in sleep.

  *

  We wait a relentlessly long time in the hospital waiting room to see the dermatologist, Dr Lyme. You get distressed as we sit here and I wonder if it’s your skin getting agitated by the heat in this airless building.

  We are wet bandaging you at the moment. Plastering you in ointment and wrapping your limbs in Tubifast bandages. We are limiting your diet too. We’ve realised you are allergic to some foods. At first the doctors were dismissive as it is apparently rare, but you are. We’ve discovered you’re allerg
ic to all sorts of things: nuts and peas, fish and lentils, sesame and chocolate too. The doctors have become so concerned about your lack of weight gain that you were admitted to hospital again last month and tube fed to see if that could help. I’d slept by your side on a hospital chair. I’m seven months pregnant now. What is going to happen when the new baby comes?

  It didn’t work. The tube threaded down your throat and into your stomach incensed you. The nurse would ask me to hold your hands, your arms but as soon as I let go you pulled the tube out, gagging as it came up your throat. I’d try to distract you but it was impossible. You screamed so hard for so long that the doctors aborted the plan and sent us home after a day and a night. Now they are suggesting a gastrostomy, they see it as a last resort. You are booked in for surgery in a few months’ time. I’m concerned. How will this work? You will rip at a tube if it’s fitted into your stomach, cause a wound, an infection that could become serious. We are trying to find any possible way to prevent this operation having to go ahead.

  *

  I am waiting to have your diet and weight assessed at the dermatology clinic; we’ve been in the waiting room for over an hour. Dr Lyme’s clinic is running late. It always runs late. The waiting room contains a row of moulded plastic seats fixed in a line to the floor. The air is stagnant and hot. A television is suspended from the wall and CBeebies is on. There is a play den and musical toys. Children and toddlers run in and out, opening and shutting the play door, interacting with each other. You can’t and you are frustrated. The fluorescent lights shine harshly down on us. How much longer? A nurse steps forward and calls out a name that is not yours.