Lonely child

It makes me sad during this time of isolation that my little bubbly outgoing sociable girl often seems lonely desperate for the company of other children. Yes she has me and her dad with her but it isn’t the same as someone a similar age.

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At the door with her nursery bag wanting to leave to see her friends

Waves excitedly

When she sees other children going passed our house on their bikes on the way to the park for their exercise or animatedly chatting holding hands she bangs on the window waving to them shouting hello. She wonders why these children are allowed to play together but she cannot join them.

It’s hard to explain to an almost two year old that those children are siblings so they are allowed to play together and visit the park with each other.

She should have a big sister

It makes me so sad because by rights she should have an older sister to play with. A big sister to run around the garden with and who would be able to relate a little more to her, rather than the two adults she finds herself spending 100% of her time with.

Violet would have been able to look at books with her, play on the slide in the garden and they could have sat together to create sculptural masterpieces from play doh.  Even just lounged together on their giant unicorn to watch TV.

Don’t get me wrong I grew up with siblings myself so understand all about the arguments but you know what I would like to have to break up those fights and solve the disputes rather than try to cure lone tantrums about wanting to see others.

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Two of Aurora’s four cousins who she is missing at the moment.

Until now whenever I’ve gotten upset about her not having her sister here to play with I’ve taken comfort from the fact she has cousins she’s close to that she can grow up with. This current situation that stops her from seeing her cousins and indeed her friends reminds me how alone she really is.  I was lucky enough to grow up with a brother and a sister.

Facetime

Yes we can video call but she’s not overly interested in that. If we show her videos of her friends and cousins she watches them over and over finally tantruming when we stop her watching for the 100th time.

After seeing friends from a distance waving & chatting to them from the end of the driveway or over the fence she then has a tantrum because she’s not allowed to play with them. She’s even gotten her nursery bag taking it to the front door in an attempt to leave to go play with other children.

Adverse affects?

I fear that when this is all over our vivacious little girl might be a shy and reserved wallflower who has forgotten how to interact with her peers or other children.

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Playing in the garden

A close friend of mine who grew up as an only child once told me she wanted to have more than one child as growing up as she dreamed of having a sibling to play with. She said she used to feel envious watching me with my brother and sister wishing she could have the same.  I never really understood what she meant until now.

A new kind of grief

Watching my little girl cry and sob and tantrum because she wants to play with the children going passed our house breaks my heart.  Even more so that by rights she should have at least a big sister with her right now and actually she is the youngest of three.

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Sad in her pushchair as she watches siblings play and is told she can’t join them

It breaks my heart it really does.  It also reminds me of the difficult conversations that are coming in the future when she wants to know why she’s an only child and what happened to her older sister and brother.

Not alone

I recently came across someone else on instagram who is going through a very similar thing with their daughter and the isolation situation so I thought it was important to share this in case it might help even more out there to know they aren’t alone in this.

 

Big love

 

Sarah

Always Violet Skies

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It’s not about you

Yesterday I was in hospital with my daughter and they tried to take blood from her 5 times and failed.  It was horrendous having to hold her still while they inflicted pain onto her. Fortunately for her and me it was for some tests as an outpatient rather than them trying to get IV lines into her as a hospital admission.

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Aurora with fish at RMCH

If you have been through this with your child you will know how distressing it is.  Even more so if you have been through it with a child for weeks to have them then die at the end. This experience brought back many harrowing memories of my daughter Violet for me and has made me want to write this article and I hope you will take a few minutes to read it here goes…

It is not about you

There seems to be some people still frequenting public places and still having social gatherings. Those who aren’t practicing social distancing with an “it won’t happen to me. I’m low risk anyway” attitude.

I implore you to share the hell out of this article and ask people to do one thing and read this to the end.

4 years ago

Nearly 4 years ago if you had have asked me if my daughter would die from pneumonia I’d have said “what no chance they have medicines and hospitals to prevent that”. But guess what?  She died and the hospital nor us could save her. Think about that for a moment.

A disease the hospital knew all about; one that’s been around for hundreds and hundreds of years. One of the best children’s hospitals in the UK couldn’t save the life of a toddler. Think about that.

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Violet 3.5 years ago watching TV in Royal Manchester Children’s Hospital (RMCH)

Now I don’t tell you this for pity or for you to feel sad please read on.

Everything and anything

If you had told me or my husband that to save her we’d need to sign away our houses. We would have done just that. If you had have asked us to give away all our belongings and sign away any future earnings then we’d have done that too. We would have literally given everything and done anything to save her our beloved daughter. I know the rest of my family and close friends would have also. Think about that for a second.

I still remember the nightmare day she died and I still have nightmares and visions of it 3.5 years later. Again I don’t want you to feel sad or pity for me, just to keep reading and thinking.

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Violet asleep in Royal Manchester Children’s Hospital (RMCH)

As my daughter was taking her last breaths and the doctors were fighting to try to save her. Four of my family members including myself were in that very room. I remember we were begging at this point. Yes we were begging and pleading with her to muster the strength to fight. We were pleading with the doctors to save her. We were pleading with whatever higher power there might have been to save her, even if it meant trading our own lives instead. Think about that for a minute.

We would have traded our lives all four of them for her one fragile beautiful little soul.

Stay home

So that’s it folks that’s what I wanted you to read not for pity. For the realisation that all you have to do to save someone’s child (everyone is someone’s child) is for you to stay away from others. You keep your distance and stay inside your homes in order to save a child. That’s it. You don’t have to give your life for theirs just stay home or at a distance and wash your hands.

Yes I know some of us have lost our livelihoods and money so I don’t want to belittle that but remember what I said that we’d have happily given absolutely everything, including our own lives, to save our daughter.

Ask anyone who has lost someone they loved more than anything, whether a child, partner, parent, sibling or friend what they would do or give to get them back. It would be a lot more than simply them staying at home or away from other people.

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Aurora digging in her sand pit after hospital yesterday

Hell

If it would bring my daughter back hell I’d move there. Yes to hell if she’d be alive again.

We’re not asking you to give everything or do a deal with the devil just stay home and away from others for maybe a few months. That’s it.

Isolation at this time will save lives and whilst you might think you’re ok it’s not about you. It really isn’t about you right now.

Do it for those you love because take it from me hell is going on living when someone you love more than life itself isn’t.   It can happen to you too I’m proof of that.

Trade your time for a life. For the life of a child.

Thanks for reading and thinking.  Thanks for your time.

Big love & hugs (virtual of course)

Sarah xxx

Other posts you might want to read are –

Don’t just survive thrive

Curve balls

Surviving after child loss

Curve balls

If you’ve ever lost anyone and especially if you’ve lost a baby or child then you will know more than most that life can give you almighty curve balls.

These sudden changes in circumstance if it involves the loss of a significant other or a child can feel like the curve ball is an asteroid sent for total destruction. If you have somehow managed to survive this mother of all apocalyptic curve balls then you will understand now why the curve ball of a virus leaves me shrugging saying “meh”.

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Spring has sprung in Southern Cemetery – Violet Skies

Yes I’m in a high risk category because of my heart op recovery and if I catch the dreaded COVID-19 then could be very poorly. I’m self employed and my business is travel and hospitality. These industries are currently in free fall and I have mortgages to pay. I also have a house overseas again with a mortgage that I rent out to holiday makers, again that will be hit by this epidemic. People I’ve spoken to expect me to be far more stressed out and panic stricken than i actually am.

I think I’m so calm about it because you know what I’ve already been to hell and I lived there for a while. I’ve already had the very worst thing happen to me. This virus isn’t the very worst thing. I’ve lost 2 children and still I’m clawing my way back into a new reality.

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Make the most of little things – Wine & bubble bath

I’m not overly worried because you know what? I’m a survivor. My family are survivors. We will get through this new challenge the way we have gotten through all the other sh*t that’s been thrown our way, over the years, and yes we’ve had a lot.

We will get through this new challenge with as always compassion for others, the adaptability to be able to seize every opportunity and by looking after ourselves to ensure we avoid taking unnecessary risks to our health.

This too eventually will pass and then people will be travelling, shopping and partying again until then please be kind to others.

In the words of the poet Bon Jovi “keep the faith” and wash your hands people!

Big love,

Sarah xx

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Count your blessings 

Surviving child loss

Don’t survive thrive

 

 

A broken heart

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All I want for Christmas is… keyhole surgery – doesn’t really have that nice a ring to it does it?

For those of you who don’t know I have a broken heart, and no I’m not talking about the metaphorical one I’m always bleating on about after having lost two babies, but my actual physical heart.

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My discovery

I discovered it after I had lost Violet and was in the early stages of pregnancy with my first rainbow baby Arthur. I kept having dizzy spells and after my GP diagnosed an inner ear infection months earlier I thought nothing else about it until I saw a private consultant about something else and mentioned it. He said it sounded more like a blood pressure thing and so let’s check your heart. He did and low and behold it seems I have a congenital heart defect an ASD or hole in layman’s terms.

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Of course I have a broken heart

I just remember laughing when he told me and said “of course I have a broken heart my daughter just died”. He explained it’s probably been there since birth but I’d just not had the symptoms accurately diagnosed before.

He read all the symptoms to me and they are basically all the symptoms every new mother has. They include lethargy, tiredness, weakness, dizzy spells (which are common for me due to low blood pressure – Olympic athlete level) and breathlessness.

Exhaustion

Even pre-baby I had lots of these all the time but I just assumed I was unfit (even when I attended a gym and had a dog so walked hills regularly) i often felt exhausted but put that down to being lazy & having an insanely mad busy job.  Now I see there was clearly an underlining reason I hated PE at school, why I was rubbish at sport and maybe it was instinct that told me to cheat at cross country so I didn’t have to run? Apparently if I’d been an extreme sport enthusiast or a marathon runner I’d have collapsed.

Anyway this week I headed into hospital to have a much needed MRI scan (since the issue was spotted I have been pregnant pretty much ever since 😆 with my two rainbow babies so couldn’t have a scan). They are now deciding how to fix it, as if I don’t it will begin to deteriorate further and then will be unrepairable. So big moment really will it be a keyhole procedure or full open heart rib breaking surgery?

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Meh

It’s now dawning on me that this is a huge thing as I’ve always just shrugged it off with a meh what will be will be but now I’m like “oh shit let’s hope it’s not full open heart I need”? Quite like my rib cage as it is.

The black humour part of me says they’re going to fix my broken heart well good luck with that one what are they going to do bring Violet back? I wish! 💜 here’s hoping for good news from the specialist this Christmas.

What are you wishing for this Christmas?

Love Sarah xx

Always Violet Skies

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Tis the season to be jolly

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Well not for lots of people it isn’t. People who are alone, homeless, financially struggling, have mental health issues or who have lost someone dear to them it’s often a time of year they dread.

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Violet’s one and only Christmas morning

For us we face another Christmas without our little girl who’d be an excitable 3 year old this year and our little boy for whom it’d be a first Christmas. My husband will experience another year without his beloved father who died just before becoming a grandpa, a role we know he’d have excelled at. This year however, unlike the last two years, will be bittersweet for us as we now have our gorgeous little rainbow baby Aurora who will be 5 months old.

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Violet in her Christmas jumper and matching trousers!

The first year after we lost Violet we actually couldn’t face Christmas at all so a lovely friends parents’ leant us their holiday home in the Caribbean and my mum treated us to flights so we could escape the whole season for 2 weeks. We were very fortunate to have such wonderful friends and family that could afford to help us escape in this way. I know others often aren’t as lucky and may choose to escape through shutting the world out at home. Or maybe their escape is immersing themselves in other people and going through the motions of Christmas, perhaps if they have other children then they have no choice.

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Me with Violet this time 3 years ago.  Photo taken by the amazing @hollygoeslightly

Last Christmas we spent with family who happened to also be going through a hard time, albeit for a different reason, as we wanted to do what families should do and be there for one another. Although we did escape for New Years and what should have been our Arthur’s due date, as we couldn’t face that so we booked cheap flights and headed off to Morocco.

This year will be the first year we don’t escape Christmas or New Years, instead we are inviting family to spend it with us. We will wake up with an excitable 4 year old niece on Christmas morning and it will be a first Christmas for our littlest nephew as well as our daughter. The fact that we can help to make it a magical day for my niece and nephew, I think will help us to get through it.

What’s sad is this year the kind family who helped us to escape that first Christmas have just suffered a devastating loss themselves so this festive time will now be especially hard for them. Our hearts go out to them this year.

Our motto is that if you are able to celebrate Christmas this year then embrace your family or loved ones. Make the most of every second because you have no idea what the future holds. Also if you can help to make someone else’s Christmas better or easier this year then do it. Whether you donate to a local food bank, drop Christmas presents into a charity looking after disadvantaged children or just invite your elderly neighbours round for Christmas dinner, nothing says Christmas like looking after those who are suffering by easing their pain or helping them to also have a nice experience, even if for one day only.

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Me & Violet with my brother & sister with their little ones 3 years ago

I can’t wait to hear all your lovely stories of goodwill and sharing. I’ve heard lots already, as I’m blessed with lots of amazingly kind people in my life. So far there are tales of people stocking food banks with so much food they can feed many families over the 3 days of Christmas. Those who fundraise and collect donations for presents for underprivileged children. Some have collected blankets for the homeless.  Keep up the good work. They say money is like manure; it’s not worth a thing unless it’s spread around well I say the same can be said for kindness.

Sending big hugs to you all and I can’t wait to hear more heartwarming stories.

Love

Sarah x

A Magical Woodland

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When I heard about this magical woodland event I was excited to attend with my family, including my 4-year-old niece and baby nephew too.  I hoped it would live up to expectations and we weren’t disappointed.

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Some of the girls in my family

The entrance

The lighting was breathtaking with different themes in various areas of the woodland. Special LED effects, changing colours, laser lights and hanging orbs made the park a sensory experience.  The musical choice made it feel as though you were entering a Harry Potter-esque world so felt truly magical as we entered the wood.

The woodland

Several paths wound their way through different sensory experiences to a central campfire area where you could purchase marshmallows on sticks to toast around the fire and there were a few food stalls there too selling hotdogs, mulled wine and sweets.  The gooey toasted marshmallows certainly went down well with my niece Evelyn.

Aqua rhythm

One of the highlights in the woodland was the Aqua Rhythm water fountain.   Jets of water danced to along to music and a laser light show accompanied it.  Evelyn and other children stood transfixed in front of it for quite some time.  My baby nephew, 8 months old, watched it from his pram wide eyed so this proved a sensory hit for babies too.

Owls

Just beyond the “Heart of the Woodland” there was an owl marquee so children can find out about and see owls up close. This included a Little Owl that proved a hit with Evelyn who wanted to take it home.

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Educational

It was also a fun educational experience as there were some great interactive puzzles and games for children and adults alike interspersed around the woodland.   The favourite for Evelyn was a game that distorted your voice and she spent quite some time making various bodily sounds through it finding it hilarious when it returned the noise with added depth!

Magic

There was a flamboyant chap in a flashing top hat that my niece described as “clearly a magician”, who introduced himself as a physicist so she was close!  He demonstrated to us the concept of a sonic boom using a giant sized Newton’s Cradle style pendulum, that was lit up so as the balls swung they lit up the sky around them.  The sonic boom you could hear rumble throughout the woodland.  It was an amazingly fun way to introduce children to scientific concepts, it made me think they need to invest in one of these giant Newton’s cradles at the Concorde visitors centre to explain more clearly this concept to children.

The rainforest area had dry ice that emulated mist and bird/insect sound effects to accompany the lighting that transitioned into different colours.  I found this area to be the most relaxing in the woodland. Whereas my niece said she found it spooky and when there was a load rumble from the sonic boom she jumped out of her skin, proving this is also a great experience to bring your kids to for Halloween!

Dry weather

We were fortunate to have really beautiful autumn weather, it was pretty mild and dry which was good as we had two prams with us. If it had been wet we would have struggled to push them round the site. So if you go when it is wet or after heavy rain I’d suggest taking a baby carrier instead to manoeuvre round the hills.

Summary

We had planned to spend an hour there but ended up spending just over two hours. There really was so much to experience we lost all track of time.  It proved a great way to tire out little and big ones. It was excellent exercise walking them up and down hills. Evelyn also ran off to climb on tree trunks and play with the interactive games too.

We had a wonderful time in the woodland it really was magical and my niece didn’t want to leave. We would highly recommend visiting before the experience finishes.

For more information and tickets which start from £12.50 click here

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I used to love September

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This is now the worst month for me.

It never used to be this way. I used to love September. It was always one of my favourite months.

The starting back at school with a new year of classes. I was such a geek I couldn’t wait. New pencil cases, stationary, new uniform and shiny new shoes always excited me.

Then there was the turning of the leaves and the beautiful autumnal colours. The amazing sunsets as the weather starts to cool. The wearing of cosy clothes – knee length boots, fleeces, jeans, jumpers & fluffy socks. Open fires, comfort food, hot toddies and bubble baths. Watching the rain from inside a warm house and listening to the wind whistle round the chimney.

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Autumn sunset in Manchester city centre on border of Salford

In the last ten years I’ve enjoyed spending time in Cyprus where it’s like a second spring with all flowers having another annual bloom so colourful and cheerful.

However all of this changed in September 2016 when my precious daughter died and in the following September my son Arthur was born sleeping too.

All of a sudden the changing colours of the autumnal leaves began to represent death to me. The darker nights and chilly weather no longer cosy but depressing and miserable. The pouring rain represents the tears I now shed at this time of year and the wind howls in pain for my lost babies.

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Autumn colours in Chorlton

I can’t face visiting my cheerful uplifting place either in the Cypriot sunshine with colourful flowers and amazing views as last time I was there I was with my daughter, but maybe I will visit again in the next few years.

This year in order to attempt to focus on something else, something much more positive, I decided to organise the Violet ball in memory of my beautiful daughter on 29th September, a few days after the second anniversary of her death, to raise money for Alder Hey hospital’s cardiac surgery fund. I hope those of you who are able to join us do so and that we all see the month of sad September out with a bang.

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Click here for details of ball.

Thanks for reading

Love Sarah

Always Violet Skies x

Emotional

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Relieved, ungrateful, confusing, complicated, devastating, exciting, ecstatic, elated, happy, sad, angry…

New mum emotions

Emotional is probably the only constant state at the moment, as with the majority of new mums, never mind those who have gone through child loss. I’m facing a wave of different emotions everyday but unlike most new mums mine include sadness, feeling angry, confused (how can you feel immense pain & pleasure at same time) & devastated that my older children aren’t here too.  I am a mother of three not one.

Midwives

The midwife service would ordinarily have signed me and baby off by now and passed our care onto the health visitors but given the extreme circumstances (loss of two children) they are keeping a close eye on me alongside the health visitors, which is nice in a way, as it is a total contradiction to the care we had 3 years ago where we were forgotten about for the first few weeks after we left hospital. We complained at the time to Manchester’s NHS trust and it resulted in a full restructure of procedures for new mum care in Greater Manchester, hopefully meaning high risk babies that have undergone surgery shortly after birth won’t now fall down the cracks as we did.

In a way this is probably also now the reason why both departments are now OTT with our care.

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Me (tired & make up free but happy) with Aurora

Are you sure you’re ok?

Midwives and health visitors ask me how I’m doing then look at me carefully to observe my facial expressions & body language to see when I say that “I’m ok” if I’m being honest. They all looked surprised when I explained after Aurora was born healthy that for the first time in 9 months a lot of my anxiety and worry had lifted. I actually felt a huge sense of relief and was also in slight shock that at last the ordeal of waiting and wondering was over. She was finally here and was healthy. Sometimes it still feels surreal so I have to pinch myself to check I’m not just dreaming and other times I still find myself because of sleep deprivation accidentally calling Aurora Violet as though my brain has regressed in time.  Although I’m led to believe this also happens often when you have multiple children who are alive too.

Anyway got to dash baby waking for a feed…thanks for reading.

Love Sarah

Always Violet Skies 😘 x

Delivering good news

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Pregnancy news

Delivering the wonderful news that you are expecting a baby is usually a happy time and I’ve seen people make announcements in the most creative ways via social media. Including an older sibling announcing they are going to be a big brother or sister, a written sign in front of a pet dog, a cutesy family cartoon and even an eviction notice on the side of an older siblings cot. There are of course those that simply post the classic 12-week scan photo with their announcement.

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Arthur’s scan photo

Baby news can be a kick in the teeth

For those of us who have lost babies, or perhaps are struggling to conceive a much desired baby, seeing these posts can feel like a real kick in the teeth or like rubbing salt into our open wounds. Of course we are delighted by the announcement and pleased that someone else, a friend or family member, has good news to announce but it still stings.

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Violet in hospital

Personal rather than social media

We have some friends who kindly contacted us first to tell us personally about their news before they then announced it on social media and I felt this was an extremely kind gesture. If you have anyone in your circle of friends or in your family who have struggled to conceive or have had a baby die or have lost an older child, then please think about telling them your news in person before you announce it on social media to the whole world, as they can then prepare themselves for when they see it online. They will really appreciate the kindness of you telling them in advance of a more public announcement.

FOMO

For some people baby and pregnancy announcements can bring a whole new meaning to FOMO on social media!

Be caring and considerate to any friends who have suffered loss or struggled to conceive.

Love Sarah

Always Violet Skies x

No answer and no conclusion…as yet

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It’s very true that no parent can imagine the pain of losing your child or baby until it happens. It might sound like a cliché but your world, as you know it, really does come to an end.

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Violet’s grave in Southern Cemetery that’s now also Arthur’s resting place too

Cause of death

It is hard enough when you are given a definitive cause for their death through a post mortem report but what happens if it is inconclusive and you have no answers?

Inquest for the truth

If this happens then the coroner may decide to launch an inquest to try to investigate why your child or baby died. What you don’t expect to happen is to have to wait over a year to get some answers from them. We have been waiting now for over 18 months without a death certificate. Our daughter still has her passport and ISA savings account because ironically in the eyes of the law she isn’t in fact officially dead.

We wish she was still alive because she’d be two and three quarter years old now!

Delays in answers

We were warned after she died by the coroner’s office that her inquest hearing might take at least a year to schedule because of the complexity of her death at Manchester Children’s Hospital. It was explained to us that criminal investigations have to take priority, which is understandable. We have only recently been given a date of this May for her inquest hearing, that will then be a whole 20 months after her death. It makes us wonder whether those involved with her care will even remember events and actions from that long ago?

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We took new balloons to our babies today – Violet would have loved the dancing monkey

In limbo

In the intervening 20 months of our lives we have been in a state of limbo awaiting answers. We have received various contradictory reports from the hospital. We also have had to chase access to many documents such as Violet’s medical records that should be turned around within 40 days of our request. Even these processes that were supposed to be relatively smooth have turned into nightmares. Involving me repeatedly chasing the Manchester NHS Trust. Even having to involve a local MP just to get access to something we have a legal right too. The constant battles we’ve had to endure would be enough, without having to deal with our grief and the unknown answers that loom large.

Rainbow baby number 1

In the 20-month void we also became pregnant with our rainbow baby Arthur and unfortunately lost him 6 months ago at 22 weeks gestation. We had a full post mortem done on him too, hoping again for some answers. We were told he had some genetic problems so we were referred to see the geneticists at St Mary’s Hospital. Who are some of the best in the world. This filled us with confidence that they would find the problematic gene so that maybe we could opt for IVF genetic selection or get a pregnancy screened earlier than 20 weeks in the future. We were told this process would take maybe 8 or 9 months in order to be able to identify a particular gene or group of genes that caused his problems.

We had a letter a few days ago to say they have checked for all the obvious gene defects but they can’t find anything obvious. It must be something super rare or undetectable by today’s technology.

No reason why

The not knowing why both our babies died is almost as hard as them dying. I know the answers won’t bring them back but I think it would help my brain to make sense of things. The practical part of me would want to be able to put new procedures or tests (if possible) in place to prevent reoccurrence in the future.

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Has anyone else gone through something similar? I’d be interested to know.

Sending lots of love & hoping for answers soon.

Sarah x