1999.

This post is too long, not at all funny and all about me. You might want to give it a miss or, at least, make a cup of tea before you start. Husband: do not read this at work (don’t say I didn’t warn you).

When Teenage Son was Newborn Baby Boy, I held him in my arms and felt a fissure open inside me.

I will worry about this boy for the rest of my life.

Those were the exact words that sat in my head and they felt like a weight, like a bump you might get from a cupboard door; sore but also reassuring to press your fingers against. Like a reminder that you do still have a head.

Seven weeks later we were drowning in the detritus of new parenthood. Baby Boy was like one of those Aborigine children whose feet don’t touch the ground until they can walk. He never went down. He fed and bathed and slept in my arms. That, in itself, didn’t bother me. In fact, I was loath to lose even a minute of holding him but we were running out of food and clothes and sheets and space to sit down.

SIDS, Sudden Infant Death Syndrome, Long QT syndrome, sick baby, angry teenager.

It was Good Friday so Husband had the day off work and we decided to clean up the apartment for the Easter weekend. Husband put Baby Boy into a baby carrier against his chest and did the vacuuming while I launched myself at the laundry mountain. We were pretty happy.

Baby Boy fell asleep and Husband lay him, on his back, in the freshly laundered Moses basket and went downstairs to the garden. I was inside the door of the next room, diligently working my way through the ironing. Baby Boy wasn’t in my direct line of vision but I had only to tilt my head by forty-five degrees or so to the right to check for a small hand or a leg rising above the side of the Moses basket. I couldn’t believe my luck. I might also have been slightly peeved that Husband had successfully settled my nursling in his own bed.

I pressed a couple more tiny, blue check, baby shirts before padding softly across our creaky floor to have a peek.

Baby Boy was lying with his eyes wide open and fixed on some unknown middle distance. I had that horrible moment when you think your baby isn’t breathing and you wait and tell yourself, ‘he’s fine’. Every mother does that at least once, right?

But, you know what, he wasn’t fine and he wasn’t breathing. He wasn’t blue but he was very white. I lifted him, not into my arms but holding him out from me in my two hands. His arms and legs hung limp and his chin sank down between my thumbs. I looked into his eyes and said his name but he didn’t blink and he didn’t cry and he didn’t breathe.

Then I screamed, or maybe bellowed is a better word. Not a high pitch, more like a desperate cow calling a calf. I shouted his name and shook him and told him to wake up. I don’t know how long, less than a minute I’d guess now although it was long enough for Husband to hear me and come running up from the garden.

And then, just as Husband barged through the door and I said ‘he’s not breathing’, as if to bloody spite me, he did. He came back.

He stiffened in my hands and he fixed his gaze on me and he screamed back at me.

My very next thought was, ‘did I imagine that?’

We called a taxi and went to the hospital and did our best to explain what had just happened in our halting Italian. The University Hospital in Padova is outstanding. We felt safe from the minute we walked through the doors. The paediatric neurologist was a woman called Professoressa Laverda. If you can picture Judge Judy in a white lab coat you’re pretty close to seeing this woman. There was no way she was letting my boy leave her care until she figured out what had happened.

Professoressa Laverda quizzed me over and over and until I was convinced that she didn’t believe me and I was almost equally convinced that I didn’t believe me.

They ran E.C.G’s and tests for reflux and tests for epilepsy. They weighed Baby Boy repeatedly, three or four times a day, and measured his limbs, the circumference of his head, the distance between his eyes. He learned to smile in response to all the faces and instruments held before him.  Every night, reliably from 8.00 PM until 1.00AM, he wailed inconsolably. After that I lay him beside me in a narrow camp bed and we slept, sort of.

My mother flew out from Ireland, to bring me tea I suppose and fresh underwear, and I was grateful. A kind lady in the Irish Embassy in Rome, who had helped me find an obstetrician, phoned the hospital every day to check on our progress. Of course, every time the nurses station received a call from l’ambasciata they needed to call La Professoressa which probably didn’t help my case.

About eight days in, the paediatric cardiologist decided to run a twenty-four E.C.G. holter. Electrodes were positioned on Baby Boys chest, covering more or less all of him, and attached to a walkman-sized tape recorder. All we needed to do was take note of when he was awake or asleep.

I fed him and settled him in my mother’s arms and went for a shower. I can still remember the bathroom. It was huge, big enough to wheel a child’s cot around. There was a small, old-fashioned bath in the middle of the room and a tiny, modern shower, clearly an after thought, squeezed into the corner behind the door. The window was always wide open and there was no lock on the door; there was no way I was going to imagine myself at a spa hotel.

I got dressed and went back down the corridor to our room where everything looked exactly as it had when I left except my mother who  was looking decidedly bothered. After an interlude she told me that the holter recorder had slipped to the floor and the tape had fallen out. She put the tape back in but then, on reflection, thought she should tell me.

Gathering my courage, I called for Professoressa Laverda. ‘È caduta’, I said, it fell, and la professoressa flicked her eyes, Judge Judy style, between me and my mother. I couldn’t think of the Italian phrase , è colpa mia , it’s my fault, so I said it in latin, mea culpa.

I can still see her now, standing there, looking at me long and hard and it was as if something shifted between us and she could suddenly see who I was. She took the tape and left.

A few hours later, a small crowd of doctors and students gathered inside the door of our room. This was a teaching case.

Baby Boy had Long QT Syndrome, a condition which predisposes the patient to irregular heartbeat leading to fainting, seizures and, potentially, death. A research group in Milan was, at that time, studying the connection between Long QT and Sudden Infant Death (SIDS). They were beside themselves with excitement to have a live (thankfully) case right there in front of them. Baby Boy was labelled a ‘near-miss’ for SIDS.

The meagre three hours of tape had shown up two episodes of what they liked to call  chaotic heartbeat.

It was with a sense of some urgency that Baby Boy was hooked up to an elaborate heart monitor. I was cautioned sternly that he must be hooked up to the alarm every moment that he was asleep.

Later that night I was walking the wailing, colicky infant up and down the corridor. Trust me, colic has the power to distract you from a heart condition. Doctors, nurses, mothers and grandmothers all reassured me that breastfed babies did not get colic. Well, this one did. With bells on.

There was an American woman with a very sick baby at the far end of the corridor. She had been living on an army base in Germany and was sent by ambulance to Padova, that’s how good this hospital was that just happened to be the one on our doorstep. Anyway, I was overjoyed to have someone I could chat with and I wandered down to tell her the latest news and pass the colicky time.

Her baby had Edward’s syndrome. He was fifteen months old even though he hadn’t been expected to survive fifteen days. She was a perfectly ordinary woman, lovely to chat with and extraordinarily kind to me. She loved her son and found joy in their closeted days together. He was a sweet and smiley bundle. But, they were never leaving there together. However many days they got in that room was very likely all they would ever have. She calmed me and made me feel like the lucky one. Hell, I was the lucky one. Could I have been any luckier? I was holding the near-miss in my arms.

The hum of our voices lulled Baby Boy into a half-sleep and I sat down, still rocking him, and talked some more.

Do you think something awful happened? No, a nurse passed the window and saw me sitting there with Baby Boy at least ninety percent asleep in my arms. She came in and lambasted me. Didn’t I know he had a serious heart condition? Hadn’t I heard the doctor? Didn’t I know he could die?

I shamefacedly returned to the monitor feeling perhaps a smidge less fortunate.

Husband and I were trained in paediatric CPR. Baby Boy was weighed a couple more times so that a regime of medications could be calculated. A cardiac monitor was ordered for us to bring home. We rented it for 500,000 Lira per month and, yes, even in Lira that was a huge amount of money.

Two weeks after Good Friday, we walked out of the hospital with  some expensive equipment, a complicated prescription and a small miracle.

The monitor was a mixed blessing. We could leave the strap around his chest all the time so that we only had to plug him in when he fell asleep but that got hot and uncomfortable in the summer so we switched to strapping him when he was asleep, which usually woke him up.  As Baby Boy got bigger, he often pulled the wires out, waking us and our downstairs neighbours with a loud alarm. There were a few unexplained alarms, but he was always fine; alive and kicking.

The medication was a beta-blocker but I can’t remember the name of it. That’s really surprising because we discussed it endlessly. The dose was tiny, obviously, and the pharmacist crushed adult tablets and weighed a few milligrams on to pieces of paper which he then folded into neat parcels. Every six hours, 6.00-midday-6.00-midnight, either Husband or I would carefully open a little postage stamp-sized parcel and carefully mix the powder with water. We were then to draw the mixture into a syringe and shoot it down the back of Baby Boy’s throat.

The powder didn’t dissolve and we could never get all the granules into the syringe. We switched to pouring the powder in the top of the syringe and adding water. Baby Boy spat it and dribbled it and puked it back at us. We knew we weren’t getting it all in.

Regular blood tests showed, over and over, that Baby Boy wasn’t getting the full dose. They increased the dosage slightly but there was always the risk that we would get it all in and that would be too much.

Once a month we went back to the hospital to have a twenty-four hour E.C.G. holter fitted. The problem with that was that his chest was too little to accommodate both the holter and the alarm electrodes so, on those nights, we sat watching him all night. For about six months the holters picked up those chaotic episodes and then they became less frequent. He was growing out of it.

Despite the nervous exhaustion, I was never happier. I was living my dream (with unexpected wires attached). I have memories of the three of us sleeping under a mosquito net with those wires stretched across the pillow. And, the three of us on a blanket at the outdoor pool with the monitor under a towel beside us. When Baby Boy started walking, at nine months, I cut holes is his sleepsuits and he pottered around the apartment in the mornings with wires trailing behind like a tail. I was besotted with him. I could not fathom how I could have produced such a gorgeous child. Italians stopped me in the street to admire him and he lapped it up. He learned to make a perfect ‘ciao, ciao’ with his little hands. We met Professoressa Laverda on Sunday afternoons, taking her passegiata around the town square. She always sent her regards to l’ambasciata.

We were ecstatic when the doctors decided to stop giving him beta-blockers but less so when they also decided we didn’t need the monitor any more. It was the end of my security blanket.

We all go about our daily lives with a mental barrier firmly in place against all the terrible things that could happen. You couldn’t be thinking about them all day long; you would crack up. I think that anxiety, as a chronic condition, is brought about by a weakness in that barrier.

Baby Boy’s near-miss knocked a couple of bricks out of my mental barrier. There were lots of nights, even when he was six or seven, that I asked Husband to go and check him because I was too afraid to do it. His QT is just inside the limits of what is considered normal. A cardiologist in Dublin reassured me quite forcefully that, ‘normal is normal, someone has to be the high end of normal, that’s how statistics work.’ Yes, well, you know what they say about statistics.

Still, weeks and even months pass now when I don’t think for a second about heart monitors or beta-blockers. Eventually you learn again to fill the gaps in the barrier with distractions.

But then, this weekend, I was transported right back to Good Friday, 1999. It was as if a portal opened up and my brain flooded my body with messages of ‘this is exactly like then’. I felt the same fear, the same vortex of panic and disbelief. I paced, actually paced because I couldn’t sit and I couldn’t stand. If only someone could have put a baby into my arms. All I could do was hold my phone in my hands, press my thumbs against its face and whisper, ‘come back’.

The worrying still feels like a reassuring bruise. The bad things don’t happen when you are worrying. They happen when you are reading, or ironing, or writing blog posts about dandelions.

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34 thoughts on “1999.

  1. That’s a huge thing to live with. I wish I could say something to comfort you, but that would be patronising. Please keep reading about beautiful things and writing about your dandelions. (I would definitely give up the ironing, though) Sending love xxx

    Liked by 1 person

  2. Gosh, Lynda. I hardly know what to write. When you become a mother, everything changes. I do hope that you (and your family) are ok. Sending all good wishes through the ether. Sam xx

    Liked by 1 person

    1. Feeling much better. Husband texted me from work to tell me that I cried in my sleep. I figured it was time to let it all out. Saturday is the boy’s story, not mine, but this worked.

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  3. One of mine gave me a similar scare, we only had to spend a few nights at the hospital with a monitor. I wish I could have been a friend for you then. These things make us look at life differently forever, how fragile it is. Melanie

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  4. Oh my dear friend…if only I could blink my eyes and be there to give you a long, tight hug….I pray and hope all is well with your son…..and unfortunately my dear, bad things happen even when your worrying abut them, …..xxxxhugsxxxKat

    Liked by 1 person

      1. I am so glad…my heart was racing as I read your post….I can’t even imagine what you must of gone through and now to have it rear its ugly head once again….my prayers and healing wishes are with you and your son…xxxxkat

        Liked by 1 person

  5. Teenagers are scary. This is a fact. Babies are scary this is also a fact. When you have a near-death baby (and I never did) you surely will always carry the fear and when that near-death baby grows into a scary teen it is bound to haunt all the more. I send you all I have to send which is the love of a mother and the hope that the writing of it helped you a lot.

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  6. Scary moments….lots and lots of them…too many to count when raising boys (four for me)…God gives me peace when I’m ready to scream! Hang in there Lynda…we are strong women who handle the weight of the world on our shoulders! Hugs 🙂 🙂

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