My Book Babies

My Book Babies
You can find all of my books on Amazon, Barnes and noble, and through other retailers on my website, www.victoriapearson.co.uk

Wednesday, 11 October 2017

Ocean Dreams


 It's week 25 of Miranda Kate's Mid Week Flash challenge, and illness, work and general life chaos has meant I haven't been able to participate as much as I'd have liked to, but this week's image really spoke to me. Anyone is welcome to join in, the general guidelines can be found here.
This week's prompt:

 Ocean Dreams


We dreamed of going to the ocean. She had this romantic ideal of walking on a moonlit beach, hand in hand, listening to the roar of the unseen sea. Our dream sustained us through the long, hard years we couldn't be together, when our relationship was built of dreams and texts and snatched moments. We were going to go to the ocean.


They say life’s a bitch, but she's got nothing on the twisted sense of humour Fate has. Finally together, finally able to touch instead of talk, to kiss instead of dream. We were finally going to the ocean. Packing up the car together, all excited.  She looked like a painting, the light on her face too perfect to be real. I kissed her, then turned away to load the last bag into the boot. When I turned back, she was on the floor, lifeless, hair sprawled in the mud.

Three months later, life is drained of colour. She smiles through the pain and the sickness and the exhaustion, brave little stoic smiles, drained of their warmth. Every time I walk down this disinfectant scented corridor I hear the doctor telling us “I'm very sorry, it is terminal. We can make her comfortable…” and I have to swallow my anger, my pain, my disappointment, push it all down into the pit of my stomach and try to have my smile ready for her. I can't let her down.

We can't go to the ocean.

She asked me once if I would go for her, after she's gone. I told her not to be so daft, that miracles happen all the time, that she would be coming with me. I knew I was lying. She knew I was lying. But it helped.

We’ve returned to living through shared dreams, texts, snatched moments between chemo and physio and more tests. Funny how life goes sometimes.

We can't go to the ocean.

But sometimes, when she is feeling strong, I lift her delicate, fragile little body into a wheelchair, and we take a stroll down to the hospital garden. Well, I say garden. It's as hopeless as the rest of this place, a few sad daffodils in pots on an area of cracked, fractured tarmac, littered with cigarette butts.

None of this is fair. It should be our time.

“I'll be going soon” she says one night, startling me out of my brooding.

“I'll thought you were asleep.”

“Nah,” she says, “there'll be time for that…” she doesn't finish the thought. “Can we go outside?”

“Now? It's dark, love. It'll be cold.”

“I'm always warm when I'm with you.”

I can't say no to her. Never could, really, but I definitely couldn't now. So I fetch her chair, and argue with the night nurse and find a blanket. She dozes in the chair as I walk her down, returning the night porter’s solemn smile. It's so silent here at night, you could forget the hundreds of families going through their own private dramas in every ward.

It has been raining, and it is cold. The sad little wooden bench is soaked, so I lean on the back of her chair, under the full moon.

“let me sit on your lap” she says, so I lift her as gently as I can, terrified I might break her, and settle into her chair. There's no weight to her now, but feeling her head on my shoulder, and her quick, shallow breathing is enough to feel comfort.

“This garden is so depressing,” I say eventually. “You deserve to sit somewhere beautiful”

“It doesn't matter as long as I'm with you,” she says, “but look there, see?” she points and I try to see what she's talking about. All I see is cracked tarmac potholes filled with rainwater, cigarette butts and darkness. “it's like the ocean”

I put my head right next to hers, look down her arm, and see it. The pothole is what she's is pointing to. The water filling it ripples gently in the breeze, distorting the reflection of the moon for a moment.

“It is” I'm forced to concede, and we sit there for an immeasurable moment, watching the miniature waves lapping at the tarmac beach.

“You can find beauty anywhere, if you open your eyes” she tells me.

We never made it back into the garden.

We never made it to the ocean.

But we built our own ocean, out of dreams.


Wednesday, 7 June 2017

Mid Week Flash - In The Mirror





My next offering for Miranda's Mid Week Flash challenge. The General Guidelines can be found here.
This week's prompt was taken in a former, now abandoned, TB sanatorium in Grabowsee, Oranienburg, Germany, which is a little north of Berlin. It was taken by someone over on Flicker called Michael.

In the Mirror



They say I’m mad, but I’m not. That woman in the mirror isn’t me.

Oh she looks like me, no doubt. Whenever someone is looking, she mimics me perfectly. Then when they turn away her blank expression twists into a malicious grin, she gives me a seductive little wink, and my blood runs cold.

I know she’s up to something. I don’t know what. They all think I’m mad, but I’m not. That woman in the mirror is not me.

I can feel the cold fog of evil seeping from the mirror in the night. I can hear her softly giggling. What does she do when I can’t see her? What does she want from me?

I can’t take it anymore. Lying here, straining my ears, trying to hear what she is whispering. I can’t stand it. I can’t take it anymore.

The rage propels me out of bed, I stride over to the mirror, rip down the sheet covering it, shaking with rage and fear in the cold fog.

She stands there, tall and proud in a perfect replica of my nightgown. Thrusts her chin up at me, a small smile playing about her lips. She doesn’t say anything, just gives me a look as if to say ‘What are you going to do? There’s nothing you can do, you’re powerless’

I scream, punch at her face. As the mirror shatters,  I hear her little squeal of delight. Driven by fury, I hit and screech and scream over her laughter.

 I feel the cold drain away, as pain fades in. My hands and feet are covered in blood, I’m surrounded by glass.

My housemates come rushing in and see with a glance the blood, the shattered glass around my feet, my tear-stained face. They see all that, but they don’t see what I see.

In the fractured mirror are all their reflections. But there isn’t one of me.
She has gone. I’ve set her free.

They all think I’m mad, but I’m not. That woman in the mirror wasn’t me.

Wednesday, 17 May 2017

TMI Post - Periods and Menstrual Cups

Fair warning, this post is going to get a bit...icky. I’m going to be talking periods, menstural cups, hormonal crashes, bleeding, cramps and spots. I won’t be posting pictures or anything, but if you faint at the thought of blood or cringe when you see the word “vagina” I’d recommend you skip this post. I’ll go back to strange stories, political pondering and random rants later, I promise.

I hesitated a lot before writing this post, which is kinda weird when you think about it. A massive proportion of the population have periods but talking about it is still pretty taboo. I struggle a lot with my period; I suffer migraines, cramping, extremely heavy bleeding, acne, bloating, anaemia and hormonally triggered depression. When it’s that time of the month, I feel and look really ill. But if anyone asks what’s wrong with me, I tend to say I’m a bit run down, or a bit tired, or I’m feeling under the weather. I’ve no idea why I don’t feel able to say I’m in so much pain I can barely move, I’m bleeding so heavily that if I move too much I’ll “leak” and I feel completely and utterly worthless. I guess that is a bit of a conversation stopper, but I’m not usually one to shy away from the tough topics.


Everyone experiences periods differently. There will be some people reading this who have no struggle with their periods, who get a little light cramping but can still jump about on a trampoline, ride a horse and work out like they are in a tampon ad who will be rolling their eyes at this post. Fair enough, lucky you. There will be people, trans men, for example or non binary folk, who have real emotional struggles with their period because it is a physical reminder of an identity struggle I can’t begin to understand, and they’ll have their own menstruation issues. There may even be some people reading this who don’t have periods, and wish they did, or who have fibroids or PCOS and therefore have a much tougher time of it when they are bleeding, and think I should stop whining. Fair enough again. I can only speak of my own experiences.


My battle with my periods has been ongoing. I’ve tried every type of hormonal contraception to ease my symptoms, with little success. Even when I found a method that stopped me bleeding completely – the depo jab -it didn’t stop the other symptoms. If anything, without the bleeding, I felt the other symptoms – digestive issues, mood swings, dry then very oily skin, bloating, etc more keenly. It also had the downside that it turned me into an irrational, paranoid wreck. Worth a try,  if you’re looking for a long acting contraceptive method you don’t need to worry about and you’d like to not bleed, but it didn’t work out well for me.


A couple of years ago I decided that being on various types of hormones from my early teens was probably not great for me, and I decided to come off hormonal contraception completely and see if my body settled itself. I’ve had mixed results.


Coming off hormones completely has made my period a lot more regular, which shocked me. One of the reasons I was drawn to the pill was that I thought it would regulate my erratic periods, but for me it just resulted in spotting throughout the month and terrible acne (again, everyone is different and it may well work for you). Since coming off of contraception, my periods have settled into a 29 day pattern, which has at least reduced the anxiety I used to suffer about unexpectedly starting to bleed in public (or when wearing nice panties).

My period now lasts 5-7 days (which, as someone who once had a 4 week long period, is so amazing), but I still bleed really heavily, particularly in the first 2 days.  I’m taking full on Niagara Falls, bleeding so fast I’m clotting, getting through a super plus tampon *and* a pad in an hour heavy. During a typical period I’ll easily get through two packs of super plus tampons, a box of regular tampons (for days 3-7) and two boxes of pads. That’s a considerable chunk of my monthly income. I’m not quite sure why sanitary products are considered a luxury item and caviar, for example, is not, but you do have to pay VAT on pads and tampons. So I’m paying an extra 5%* on top for the luxury of sobbing my way through my monthlies.  Our government came under pressure to scrap the tampon tax, but decided instead that they’d give the money raised to women’s charities. On the face of it, that’s hard to argue with, but then I found out that a proportion of that money goes to anti choice charities.



Nope. I’m not having that.  I don’t want my money being used to dictate what other women – often desperate, vulnerable women, do with their bodies. I find organisations like that highly immoral. I know there are people that disagree with my view and that’s fine – they can donate to the charity if they so wish. But I think it is fundamentally wrong that my money was being used to fund this group without my knowledge or consent, by way of a tax on a product that I am forced to buy.


So I started looking at alternatives. There’s a fair amount out there I hadn’t heard of before, including washable pads and tampons, specially designed panties that absorb the flow, and menstrual cups.





There is maybe a certain ick factor to reusable pads and tampons, but in theory they are perfectly hygienic provided you keep them clean. I didn’t choose them however, for the same reason I didn’t use washable nappies for my babies. Although they seem a lot more eco-friendly (even when you take washing and drying into account), I have 4 children and I already do a lot of washing. I didn’t dare add anything however small, to my ever growing mountain of laundry. I’m rubbish at keeping up with it all as it is.

But while I was looking at reusables, the menstrual cup caught my eye, particularly the anecdotal claims that it makes periods lighter. Save me money and make my monthly hell more bearable??



I’ve seen it claimed – although I can’t tell you how accurate it is – that the chemicals used to bleach cotton and control odours in pads and tampons can make you bleed more heavily. It’s certainly true in my experience that tampons-being absorbent- can leave you feeling dried out and sore, because they absorb all the moisture in the vagina, not just menstrual fluid. The cup was supposed to help with both of those things. They are made from medical grade silicone, and collect the blood rather than absorb it, so they don’t suck all of the moisture out of you. I figured it was worth a try, so I started looking into buying one.

There are loads of different cups out there, that come in different sizes and different levels of firmness, but the basic idea is the same with them all – they are soft silicone, bell shaped cups that you fold and insert into the vagina, where it opens out and forms a vacuum seal to hold it in place and prevent leaks. When it’s time to empty it, you squeeze the end slightly, give it a little wiggle, the seal breaks and you pull it out to empty it. More on that later.

I was a bit bamboozled by the range of cups, and decided in the end to go for a cheap version while I test it out rather than spend around £40 on something that might not work for me. Menstrual cup users have since told me that’s really dangerous because it might not be medical grade silicone, but it was sold as that and I got it from a fairly reputable retailer, so I’m not too worried. I only ever intended on using the cheap one for a couple of cycles anyway.

They come in two standard sizes, size A is for women under 30 who have never given birth, either vaginally or by caesarean. I got the size B because I am over 30 and have given birth 4 times, including once by c-section.

It arrived in a small, pink storage bag, similar to the type you get jewellery in, which would be fairly discreet to carry in your handbag. My first thought was; “that’s enormous.” Honestly, I nearly gave up on the whole idea without trying it out. But when I folded it, I saw it was a comparable sort of size to a super plus tampon. I thought back to my first time using tampons and having that exact same thought.



The cup has markers on the side to show you how much blood you’re losing. Not really important for me, but some people might find that useful, especially if you’re trying to get to know your period and what is normal for you. All of the cup, including the stem, sits inside the vagina so you don’t have a string dangling, or wings hanging out of your panties and sticking to your leg or anything like that. If the stem on yours is too long, you can trim it. The end of the stem should be about an inch inside you, give or take.

Apparently it can ride up a little in the night and cause you to panic that you’re gonna have to go to A&E and explain to a hot doctor that you need help removing a cup of blood from your vaj, but that hasn’t happened to me yet. According to the many reviews and videos an comments I’ve read over the last couple of weeks, if that happens all you need to do is chill out, have a cuppa and sit up or walk around for a while and let gravity pull it back down again. There is no secret door in your vagina for it to escape out of, it isn’t going anywhere, and leaving it in a tiny bit longer isn’t going to hurt – you can leave a cup in for 12 hours at a time (flow permitting).


One of the advantages to the menstrual cup is that it carries no risk of TSS, so you can put it when you’re expecting your period, which is brilliant for me because I go from nothing at all to full on Carrie with no warning.



So when I started to get  cramps just before bed and checked my calendar to see I was definitely due on, I decided to put the cup in before I actually started to bleed. You should never ever ever do that with a tampon-- it can give you a potentially fatal infection-- but it’s fine to do with the cup. I needn’t have worried about the size – once it’s in place, you can’t really feel it. You do need to run your finger around the edge of the cup once it’s in place, to check it has opened fully to create the seal. If you are squeamish about touching your own vagina, a cup probably isnt for you. If can feel your cervix when you run your finger around the cup, you need to take it out and try again, because it won’t catch anything like that.


I woke up the next morning expecting river of blood all over my bed and an extremely grumpy husband,  but my underwear was clean. I decided I’d probably done myself a damage by leaving it in all night for no reason- I had mild cramps but I wasn’t feeling nauseous or lightheaded at all so I figured I hadn’t started yet. Then I went to the bathroom to take the cup out, and had the shock of my life to discover it was half filled with blood.


Was it gross? Well, it wasn’t exactly pretty. But I didn’t get any blood on my hands at all, so for me it was less messy than tampons, because I bleed so heavily the tampon string is often saturated. If you find the sight of blood hard to deal with, you might find emptying it into the toilet a bit gross. 20mls of fluid looks like a lot when you tip it into the toilet, and menstrual fluid is thicker than blood from a cut, and can contain clots, so it does look kinda grim. It was really easy to remove and empty though, and then you just give it a quick rinse and reinsert. Nothing to throw away, no product to flush, no fuss. At the end of your period you give it a more thorough wash, and sterilise it. You can do that by simply boiling it in water on the stove, but I have a steam steriliser I no longer have a use for, so I just chuck it in there.


The big test came straight away – my son needed a lift to school for his exam. I can’t usually drive on the first day of my period; I’m in too much pain, I’m nauseous, and I'm too clumsy. His school is 20 mins away. That’s 40 mins without access to a bathroom. I’d have soaked through my seat. My cramps were still bad, but they were bearable and – whether it’s related to the cup or not, I’m not sure, but I don’t seem as clumsy this month. I’ve not broken anything yet, anyway. So I drove him, without even a pad. It was terrifying. But when I got home, my underwear was still clean. In fact, I got through the first 24 hours without a leak at all. Unheard of.


I did have a minor – and I mean very minor – leak during the second night. I even felt/heard the seal break, but I didn’t get up to check it because I was already in bed, and I’m lazy. It was literally just a spot though, so no big deal. And I’ll know next time.


Will I carry on using it? Almost definitely. I’ve only used it for one period and already I find it less messy than tampons and pads, and more comfortable. I’ll probably invest in another one, partly because people scared me with their horror at me buying a cheap, off brand one, and partly because it’d be good to have a spare because I am clumsy when I’m on my period and I’m almost certain to drop it down the toilet at some point so it’d be good to have another for while I’m sterilising that one. I may also invest in a couple of washable pads to wear at night in case it shifts (some cups come with a couple as standard).


I’ve yet to empty it in a public toilet. You wouldn’t necessarily need to anyway, because you can leave the cup in place for 12 hours, but it may be worth carrying a small pack of flushable wipes or a small bottle of water with you if you feel you may need to. Some people have said you can just go into the disabled toilet so you can wash it in the sink without having to leave the stall, but I'm uncomfortable using disabled toilets personally, as I'd hate to make someone who really needs to use it wait. There isn’t any smell or noise with the cup, so it would be as discrete as changing a tampon, if not more so (less rustling). You don't need to remove it to go to the toilet, but if you have those fun kinds of periods that play havoc with your bowels, you may need to check the cup is still in position after.


It’s a bit early to tell if it has made a major difference to my symptoms. Could be that I feel less crampy and nauseous because I hoped to – but placebo or not, I’m just grateful I’m only dealing with anaemia, acne, and a tearful sense of worthlessness this month.

  Someone pass me a giant chocolate bar and hit play on the Dirty Dancing DVD on your way out, I have a three day date with a hot water bottle and my quilt.




*Originally, I said 20% here, wrongly assuming we pay full rate VAT on sanitary products. I was then sent a link to the gov.uk page showing that sanitary products are charged a reduced VAT rate of 5% - thank you to @rosamundi on twitter for correcting me on that ☺

If you'd like to donate a couple of quid to help keep me writing, you can do so here.




Wednesday, 5 April 2017

Mid Week Flash Challenge Week 5 - You Are My Heart

My next entry for Miranda Kate's mid week flash challenge, the General Guidelines for which are here.  


This week's prompt photo was created by Marcela Bolivar, a digital artist from Columbia. You can check out some of her other wonderful creations on her website here.


You are my heart

Once, I am sure, I was complete. A whole, living, breathing being. I used to taste food, feel music. I used to be alive.

Then along he came. He filled me so completely, there was no room for anything else. Where once I held passion for art and dancing, good company and good movies, now there was only him.  I lived him, breathed him, he didn't just hold my heart, he was my heart. I didn't mind, I didn't miss any of it. I didn't need any of it, he fulfilled me completely.

And now he has gone, and I am a shell. I eat without tasting, I go through the motions of social interaction without engaging. I stare at screens without taking anything in.  I exist without living.

All that's left of me is the ghost of him, as intangible as a rippling reflection on a midnight pool.

Wednesday, 22 March 2017

Mid Week Flash Week 3 - The Beat Goes on


My next entry for Miranda Kate's mid week flash challenge, inspired by this guy:


 The picture prompt this week is by  Ekaterina Zakharova, a Russian photographer who named him '1Fairy'. You can find more on her Deviant Art page.

The General Guidelines for the mid-week flas challenge are here.  


The Beat Goes On

The trouble is, no one believes in fairy tales anymore.

Back when I was a kid, some people took them seriously. My Nan did, certainly - she left cream out for the little folk, touched wood, sprinkled salt, and always warned us to stay on the paths if we ventured into the woods. She even gave me a tiny iron horseshoe to keep me safe. I should have kept it.

But nowadays, with our lives so dominated by social media and selfies sticks and double shot mocha cappuccinos, we are lulled into a false sense of security. The woods are just somewhere I jog through, not an otherworld of mystery and magic.

I was panting along, well on course to beating my personal best, the only sound the slapping of my feet on the path, the thudding of my blood in my ears. I was totally in the zone. Then I noticed the annoying little stone in my shoe.

I tried to ignore it, but after a few steps I realised I couldn't. Look after your feet, and they'll look after you. If I ignored it, I'd get a blister, and that would totally mess up my training.

I reluctantly stopped,  and stepped off the path to sit on a convenient log and sort it out. As soon as I sat, it was like the volume had been turned up on the world. Suddenly I could hear the wind sighing through the canopy, the birds calling to each other. The sun was warm on my back and the air smelled so sweet. I lingered too long, breathing in the magic of the woods.

Then I heard it - or maybe felt it, I'm not sure. The steady beating of the drums, the low, intoxicating oboe, the high, infectious pipes that made my toes tap. I should have stayed on the path. Nan warned me. But I wanted to see where the music was coming from.

I walked away from the log, away from the path, struggling through the bracken.  Each time I thought I was nearing the source, the wind changed and just like that, it was far away again.

I tripped on a bramble whip and stumbled, and suddenly he was there, catching me.

He was not of this world, that much I know. It wasn't just the antlers, wasn't just the forest colours that swirled over his skin, wasn't just the deep, hypnotic, amber eyes that gave it away. No mortal creature could be so perfect. Naked but for a deerskin loincloth, every muscle perfectly defined, as if sculpted by angels. I was suddenly very aware of my sweaty tracksuit, scraped back hair, the spot on my chin that I hadn't bothered to try and cover.

I tried to burble out a question, but he held a finger to my lips and suddenly all I could hear was the music, all I could feel was his warmth.

His fingertip left my lips, trailed slowly down my neck, along my collar bone, down my arm. He entwined his fingers in mine, and I let myself be led into the clearing, where the other Fey folk danced.

I've never been much of a dancer, but with him leading me it just seemed natural, easy as breathing. Like being drunk but without the queasiness,  I span and danced with the beautiful ones, laughed as they ripped my clothes from my body, paid no heed to anything but the beat and the dance and his hypnotic eyes.

I don't know how long I've been dancing. I carry on through light and darkness. Through the heartbreak of him leaving, my bloodied feet continue to dance. I laugh through the jealousy as he brings some other girl to the clearing. I sing with the fair ones as we rip at her clothes. I am the dance. I am the music.

Somewhere inside, the old me cries out to stop, to rest, to go home. But the music never stops. The beat goes on. 

Wednesday, 15 March 2017

Mid Week Flash Challenge Week 2

I'm coming in to this party fashionably late , since it's week 2, but this is my piece for Miranda Kate's  Mid-Week Flash Challenge.

The picture is the prompt, and is by Kasia Derwinska, a polish art photographer.





It’s the picture that keeps me going.


Because fuck, it’s dark here. There’s no end to the desolate, barren emptiness. It stretches on and on forever, but at the same time it’s closing in so tight that if I stop and think about it for a second, falter even a moment, I won’t be able to breathe.


I focus on the picture.


It gets me through the screaming silence, keeps me going through the blackness, when all is dust. It is my talisman against the aching fatigue of battling on. It reminds me that smiling is possible, here where I have forgotten how.


I focus on the picture in my mind.  Nothing fancy – I don’t want much. Just one foot in front of the other, just like now. Only the sky is blue, and the air is sweet and I can breathe again. Smile again. See the world in colour again.


I focus on that picture – blue skies to temper my storms, a life lived in colour, with feeling – I hang it in the foreground of my mind, and I keep on walking.


I focus on the picture, and I refuse to give up, and curl up, and disappear.


One day I will have my blue sky.

Tuesday, 14 February 2017

Broken Hearts


It's Valentine's day, so everywhere I look there are hearts. Heart frames for photos on Facebook,  hearts in hashtags on twitter, heart stickers coming up as options on prisma,  hearts all over the high street.

Hearts don't automatically make me think of love though. For any parent who has experienced what I have, hearts have a very different association- CHD.
Today marks the end of CHD awareness week. 10 years ago I couldn't have told you what CHD stood for, such was my lack of awareness. Now I could bore you about Congenital Heart Disease for hours. I won't here though, honest.



I was expecting my third child - a surprise, but a welcome one. My first two children had been textbook pregnancies, easy deliveries, resulting in chubby, healthy, pink little babies. We skipped into our anomaly scan, toddler in tow, excited to find out if we would be blessed with another little boy or another little girl. We were chatting away with the sonographer about what baby's siblings were hoping for, how different it would be this time itht a big gap between babies, what a beautiful day it was outside. Then she went quiet.

I asked if everything was ok, and she told me she was having problems getting a clear view of baby's heart and she might need to get someone in to have a look. I could tell she was lying, and turned my face to the screen.

I don't know if you've ever seen an ultrasound scan, but when you look at an unborn baby's heart in 4 chamber view, it is supposed to look a bit like a circle with a cross in it. My baby's heart looked like three quarters of a circle, with the final quarter, instead of a smooth curve, bubbly like a blackberry. Every beat and pulse of his little heart looked strained, causing the blackberry quarter to bulge out in strange directions.

"There is something wrong with his heart" I said, putting the sonographer in an awful position. It isn't her job to break bad news, I know that now, protocol dictates that she calls in a consultant who will then have a look, and explain that you need a referral to a specialist. But she couldn't lie either. She asked me what made me say that, and I pointed and said "that looks wrong." She told me she wasn't quite sure, and went to get the consultant.

All the jovility of the room drained away, leaving a thick,  heavy silence that even our toddler didn't break.

The consultant referred us to the Evalina Children's Hospital in London for a foetal cardiology scan. A very different experience to a normal anomaly scan, during this type of scan there is no speaking. The consultant had to focus completely on measuring every tiny part of baby's miniscule heart. Afterwards we were taken to what we now think of as the bad news room.

The bad news room is tiny - just enough space for four chairs, and a low table with a very conspicuous box of tissues on it, and a less conspicuous stack of cardboard bowls, presumably there in case the news makes you vomit.
I didn't really react as they told me my son had two problems with his heart - Coarctation of the aorta and an AVSD - I was still in shock, I think. I felt weirdly calm and detached.

The consultant sketched out a diagram of a healthy heart and then drew a diagram of my baby's. The Coarctation meant that my baby's aorta - which would, after he was born, supply the lower half of his body with oxygenated blood, had a narrowing which would stop it being able to function. The AVSD (Atrioventricular Septal Defect) part meant that he had two holes in his heart, one either side of the valve.

The consultant explained that my son's collection of defects was fixable on its own, with a fair success rate, but that it was very rare for someone to suffer those defects without also having a severe, life limiting chromosome disorder. If he had the chromosomal issue they suspected, his chances of  surviving open heart surgery would plummet to about 2%, with an even slimmer chance he would see his first birthday. They gently let me know that, despite the late stage of my pregnancy, "ending the pregnancy" was an option. I had no idea what that would involve, so they explained that a termination at that stage would involve giving birth.

We opted for an amniocentesis to tell us what exactly we were looking at before we made a decision. By this point I was 22 weeks pregnant. I had a very definite bump, and a very active, kicking baby in there. Every time he kicked my heart broke anew. My baby had a name, he had siblings, he had a family that loved him already - and every time he kicked I was reminded that I might have to plan his funeral.

An amniocentesis is an uncomfortable procedure involving a very long hollow needle being passed through the stomach into the womb, to remove a tiny bit of amniotic fluid for testing. During the test there is another detailed scan, where measurements are taken of baby's nose, limbs,  and the fold of skin at the back of baby's neck.

I couldn't take my eyes off the screen. I just kept thinking; "This might be my only chance to see my baby alive."  At one point he reached his tiny fist up towards the cold jelly on my stomach, opened his hand and closed it again. I felt like he was waving to me, telling me "I'm fine mum, just you wait and see."
The doctor told me that what he had seen had been encouraging, but was no guarantee of a healthy baby and I would have to wait a week for the results. He also told me that he would be prepared to perform a termination "for the good of the child" if my son had the chromosome disorder they suspected - which is described as being incompatible with life.

You know how slowly time goes in the last hour before you finish at work? The next week passed like that - a fog of guilt and trying to be cheery around the other children, crying in desperate, secretive bursts in the bathroom. It doesn't matter how many medical professional tell you there is no known cause, it's nothing you did, just one of those things - as a mum the guilt shreds your soul.
A week later I got the phone call that had my legs turn to jelly and collapse beneath me. A kindly nurse that called me to say there was no chromosomal anomaly detected. I made her repeat it four times. Our baby was "just" facing a complex heart defect.  He had a 70% chance of surviving both operations. He had a chance.

I was induced two weeks before my due date, in the Evalina Children's Hospital,  where there was a whole team of experts in tiny hearts. I am so unbelievably lucky that we live in a country that has free healthcare. In countries where they don't, my son's operations alone can cost over a million, and that's without costs for delivery and care. I didn't have to worry about that, I could focus on being there for my boy, learning all I could about his condition, giving him what care I could.

At nine days old my son had his first operation - the Coarctation repair. The cut either side of the obstruction in his aorta and reattached the ends, discarding the piece with the narrowing. Unbelievably, a week later, he was home.
He was tiny, fragile, fed constantly because his body needed so many extra calories just to keep his broken heart beating, but he was alive. For a little while, he almost thrived.

Then he started to lose weight. Not just a little bit, he was so far off the growth chart that they had to add paper at the bottom. He started regularly projectile vomiting. His breathing was laboured, his eyes sunken, his skin an achy grey-blue. He kept on determinedly smiling through as I cut every known allergen out of my diet in case my milk was making him sick and woke him hourly to feed him. We introduced high energy milk into his diet, dripping it into his mouth with a syringe because he didn't have the energy to suck. I was terrified he was vomiting up too much of his heart meds to survive.

When our appointment at the Evalina finally came, we were given more bad news. Baby was failing to thrive because he was in heart failure. One of his holes had begun to close by itself, but that wasn't a good thing; the two had been balancing each other out. If he didn't have his operation soon, he might die.
We weren't expecting it so soon - had hoped he would be between 3 and 5 before he would need his main repair. His heart was the size of a walnut and would still be beating while they were sewing patches on to cover the holes.

My baby was 7 months old when he went down for surgery, on my birthday.
The longest 6 hours of my life followed. We tried to distract ourseles, but mostly we hung around the hospital grounds, with me clutching his blanket like a mad woman. When we got the call to say he was in recovery, we sprinted to PICU.
When we arrived, they were having troubles rousing him. Panic gripped me again. Could we really have come so far, only for him to fall at this hurdle?

I laid my hand on his tiny head and said "hey little man. Mummy's here now"  and he opened his eyes. A miracle.

We had our dramas in the days that followed. He developed a tolerance to morphine and would not be sedated. He would only relax and lie still in my arms - mummy morphine, the nurse called it. He had an SVT -where his heart sped up dramatically and he had to have yet another new medicine - but we got through it. Within days of his op he was pink and able to breathe. No longer so weak he could barely drink, he was no hoovering up solids like they were going out of fashion.

Two weeks later we took him home for the last time.

Fast forward 9 years and you'd never know, but for the telltale scar, that there was ever anything wrong with my son. He hasn't been on any meds for years, and now goes for a check up only every two years. For all intents and purposes he has a fully functioning, healthy heart. He is in mainstream school, participates in a wide range of sports, including kick boxing, and is an unstoppable dynamo. His energy and infectious happiness light up rooms.
We got our happy ending.

But on Valentine's day, when the hearts are everywhere,  I am taken back to that dark time, and my own heart breaks for those who didn't.




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