The challenge of pregnancy when it’s a rainbow

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Now I’m no longer pregnant oh my word work and social events are a million times easier.  Yes at a networking event, not looking pregnant, eventually someone will ask if you have kids but they won’t use the topic or babies as their opening line or icebreaker.

36 weeks pregnant with Violet in 2015

Networking events

When you’re at a networking event, obviously pregnant, people you’ve just met will use the fact you’re carrying a baby as their ice breaker and ask you about it, which if you hadn’t lost children in the past and were enjoying a relatively worry free pregnancy then that might be lovely. However when you’re on your third pregnancy having lost your first child and then lost a second at 22 weeks gestation it’s a topic you don’t really want to chat to a total stranger about. 

I avoided events

Lots of work contacts now I’m out and about again after baby have asked recently why they didn’t see me at lots of networking events, launch events, industry gatherings, conferences etc while I was pregnant and this is the main reason why. Yes sometimes I was genuinely busy or grieving but other times I really couldn’t face the fact I knew that strangers would ask me about my pregnancy with a big beaming smile on their faces.  Clearly wrongly assuming I’m pregnant and so want to chat babies. 

Last night out at 37 weeks pregnant with Aurora

Difficult questions

Knowing I’d have to answer the following questions over and over to at least three different people at events filled me with dread:

“How far gone are you?”
“Oh so not long now. What’s your due date?”

Then either – 
“Oh I think you’ll be earlier than that as you’re huge much bigger than you should be” thanks for that I actually have more fluid than normal but I didn’t want to really tell you a total stranger that personal information.

Or…

“Oh really but you’re so small. Have you had a sizing scan?” Yes I have actually I’m having scans every two weeks at the Tommy’s clinic but again I don’t really want to go into this with a complete stranger. “Oh what’s the Tommy’s clinic you say?”…

I’ve seriously had both of these opposing size comments at the same event!

Or they ask…

“Is it your first baby?” No my third. 

“Oh you’ll be an expert then. Glutton for punishment bet you’ll have your hands full then.  What other kids do you have? 

Are they excited about their new sibling?” Ah no they aren’t alive unfortunately now that kills a networking event.

Or they say… 

“Do you know what you’re having?  Is that what you wanted?  Are you excited about it?”

Or…

“Looking forward to the birth then?”
“Baby will definitely take you by surprise by being really early.”  Thanks for that I’m having a planned C Section so I hope not but again I don’t really want to go into that with a total stranger.

36 weeks pregnant with Aurora at my friends wedding. Violet Skies
36 weeks pregnant with Aurora at my friends wedding

Advice

So folks next time you’re at a social event or networking for business and you see a pregnant lady perhaps instead you’d like to simply pay her a compliment and not think you can use her pregnancy as an icebreaker to ask personal questions or as an excuse to fondle her stomach unnecessarily.  Yes strangers seem to think your stomach is suddenly fair game for a good old fondle!

Love Sarah

Always Violet Skies x

You might enjoy these other blog posts –
Somewhere after the rainbow – what happens if you lose your rainbow?

Mothering after loss

Tommy’s Angels

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A few weeks ago we were invited into St Mary’s hospital for a pleasant reason for a change.  We were one of 180 sets of parents to be invited to attend Tommy’s the Baby Charity’s afternoon tea party for all the rainbow babies born in their care in 2018.

The parents and families (some siblings came along too) and 180 little rainbow babies all born in 2018 gathered together for the first time to celebrate life. It was so magical seeing all the people that had been helped by the charity.

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Tommy’s Afternoon tea party for 2018 Rainbow Babies

About Tommy’s

For those of you who aren’t familiar with the charity it was set up to initially help those who had suffered stillbirth and multiple miscarriages.  The charity spearheads research into the conditions and looks at preventative measures to try to safeguard pregnancy ensuring a healthy outcome for mother and baby.

Leonardo Di Vinci

This weekend I visited the Leonardo Di Vinci exhibition at Manchester Art Gallery and highly recommend it, as it is amazing.  I always knew Leonardo was a genius but I discovered in this exhibition that his work actually led to changing the perception of how babies develop in the womb. He was the one that figured out that the umbilical cord feeds them too.  He also discovered that the heart circulates blood around the body in the 1480’s and looked at how it feeds the main organs.

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Leonardo’s study of human anatomy and specifically the circulatory system

Without Leonardo we wouldn’t have had the foundation for midwifery and then institutions like Tommy’s.  What is a surprise I found is how little we have actually progressed since his discovery in the 1500s as the questions as to why babies die or why women miscarry are still needing to be answered today. Those answers are being discovered thanks to Tommy’s.

Our experience

Tommy’s Manchester clinic offered me careful monitoring during my pregnancy with Aurora, after our 20 week scan. To closely keep an eye on her but also to help me to manage my stress levels too. The aim is for those child loss victims, who have lost several babies, to get reassurance that any issues or changes can be spotted by regular scans.  They also checked things like blood flow through the umbilical cord, that the placenta was working ok and checked the Aurora’s growth. Fluid levels in the womb and in my case, because of my broken heart, the blood supply into the womb too.

All of these checks helped to give me peace of mind during what was an extremely stressful and worrying time.  I lived life while I was pregnant from one milestone to the next so each 3 weeks until my next scan was a mini countdown. We celebrated after each one gave us positive news.  Although it still didn’t make me worry less as of course we had been told previously by experts during Arthur’s pregnancy in early scans that things were ok. We were also told by Violet’s cardiologist that her heart was ok “nothing to worry about” and then it contributed to her death.  So to say I was skeptical about what “experts” told me was an understatement but you know what?  The Tommy’s experts or as I like to call them Angels were right!

Afternoon tea

So the afternoon tea enabled the midwives, who had taken good care of us, and the head of the Tommy’s clinic Doctor Alex to finally meet Aurora in the flesh.  The last time they had seen her she was on a black and white screen during ultra sound scans.  It was great for then to finally get to hold and meet her. To find out that the little hyperactive baby on their screens was a fidget in real life too.

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Aurora with one of our “Tommy’s Angels”

Tommy’s is a charity

Tommy’s also have places in the Manchester 10k so if any of you out there would like to run for them and raise some money to help others like us then we would be very grateful you can get more information to register here.

Unfortunately with my poor heart health we’re not in a position to be able to take part so we have pledged to raise funds for them after we hit our Alder Hey fund target in some other way instead.  Would you come to a tea party in the summer perhaps and help us to thank our Tommy’s angels?

Also make sure you visit the Leonardo Da Vinci exhibition more details click here.

Love

Sarah xx

Always Violet Skies

You might enjoy these other blog posts –
Somewhere after the rainbow – what happens if you lose your rainbow?

The challenge of a rainbow pregnancy

Grief is like being Ship wrecked

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This time of year we find a little tricky because this is the week our baby Arthur was due to be born, and although we marked his official first birthday and day he died in September, I still feel a little tug that says we should be having a first birthday party for him in early January.

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Our little boy Arthur

Why is grief harder for a TFMR?

Grieving for Arthur I find harder and more complicated than I do for Violet as the situation is much more complex:

  • We never knew Arthur not properly. Yes I felt him move and kick inside me (a lot) but we never got to met him alive.
  • We were the ones who decided to end his life prematurely based on medical facts and delivered him early sleeping. The hardest decision we’ve ever made.
  • The bittersweet this is that if we hadn’t decided to lose Arthur when we did then we wouldn’t have had Aurora and she wouldn’t be here today. So that is hard to swallow – how can you feel sad about someone who led to the creation of someone else?

Thank you Arthur

Anyway I saw my counselor this week and she said we should thank Arthur for giving us Aurora so tonight we will toast our little boy.  She also passed me a really lovely article that was taken from a guy called GSnow’s Reddit account.  Some of the original isn’t really relevant to child loss so I have edited it somewhat and also added some of my own words but you can read the full piece he wrote here.

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The Bay of Kotor

Grief is like being Ship wrecked

“As for grief, you’ll find it comes in waves. When the ship is first wrecked, you’re drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it’s some physical thing. Maybe it’s a happy memory or a photograph. Maybe it’s a person who is also floating for me luckily it was my husband and we clung to each other. Some of my family and friends also floated nearby providing sustenance for us to carry on. For a while, all you can do is float. Stay alive.

At the start

In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don’t even give you time to catch your breath. All you can do is hang on and float. After while, maybe weeks, maybe months, you’ll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function. You never know what’s going to trigger the grief. It might be a song, a picture, seeing another young family similar to yours on the street, the sound of a baby crying. It can be just about anything…and the wave comes crashing. But in between waves, there is life.

Eventually…

Somewhere down the line, and it’s different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or a family gathering. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you’ll come out. Occasionally the wave can come from no where and totally overwhelm you but again you rise up, gasp and breathe again.

The waves never stop coming, and somehow you don’t really want them to. But you learn that you’ll survive them. And other waves will come. And you’ll survive them too.”

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Sunset over Auckland

Dianne Oxberry

I started to write and plan this article before I read the sad news today about local BBC newsreader Dianne Oxberry who sadly passed away.  I have lots of friends who were her friends and everyone who met her spoke fondly of her, so this article is dedicated to her friends and family.  May you ride the storm of grief and find some lovely memories from the beautiful ship to cling to.  If you know those close to her please help them to stay afloat.  Do this through kindness and compassion.

Big love and hugs,

Sarah x

Always Violet Skies

You might enjoy these blog posts –

More of a mother – does a natural birth make you more of a mother?

Somewhere after the rainbow – what happens if you lose your rainbow?

Mothering after loss

Guilt when a mother of loss

When you finally get your rainbow baby what then…

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Most people I meet now, after they’ve recoiled from the shock of hearing I’m a mother of three but only one child is alive, say things like “oh third time lucky then” or “at least it’s all worked out in the end”  Urmmm no it clearly hasn’t all worked out in the end has it? Has my daughter Violet suddenly sprung back to life?

Rainbow pregnancy

When I was pregnant with Aurora people could understand why I might have been anxious and there’s even a term for it PAL or pregnancy after loss but once your rainbow baby is here then people assume that’s it and you must be feeling better now. The grief over child loss must be over now you have another baby surely? You can move on and avoid dwelling in the past.

I’m a mother of three

Well unfortunately it’s not that simple you see, yes I may have another living baby now but I still had two other children before her and just like those with more than one child. When you have a new baby you don’t throw your old one away and forget about them do you? Or you shouldn’t.  If you do then social services rightly get involved. So why should it be different for angel babies? Why forget about them? How can we forget about them?

Moving on?

I don’t blame people who think I must have moved on though, as suddenly they see me out and about with my new baby actually smiling and resembling someone who’s happy. I guess I am happy fleetingly which is an improvement but it’s now as though I’m on a permanent roller coaster. Aurora smiles or babbles at me equals on a high then she looks at me in a certain way & I see her sister Violet in her equals unimaginable high & then immediate low.

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Side swipes

I still get side swiped daily by emotions but different ones from before. Seeing a mother cooing over a baby no longer makes me want to cry for the loss of Arthur although I admit seeing mums with little boys gives me a pang of pain. Now it happens when I see parents of multiple children walking with them all to the park. Brother and sisters playing and arguing together. Family lifestyle photo shoots of the whole family looking happy together in autumnal leaves (yes I do live in Chorlton! Lol). Even at Halloween cute sibling photos of older ones taking their toddler brother or sister trick or treating for the first time pour salt onto my wound.

Autumn photoshoot - Ian Scott Photography
Credit ianscottphotography.co.uk

Imagination

I find myself trying to imagine what Violet would look like now aged 3.5 and what she’d think of her little sister. How would they interact? When Aurora is bigger what arguments would they have about minor things? I find it hard to imagine and to think of Violet as anything more than a baby, almost toddler. I find that upsetting too. Her sister will never know her. I can’t imagine life without my sister so now I feel a new level of grief for Aurora for the big sister she will never know or experience.

The hallway of family photos we have where the sisters may sit side by side in different frames but never actually occupy the same one. There will be photos of Aurora getting older, fingers crossed, next to the same photos of her big sister who will eternally be a toddler.  That will be a concept I’m sure Aurora when she’s older will struggle to get her head around, how can a baby be her big sister?

Family photoshoot - Manchester Photography courses
Family photoshoot – credit Manchester Photography courses

I wonder what Violet would have been like today and what she’d have thought of her baby sister?  Do you ever wonder what if?  I do every moment of every day.

Love Sarah

Always Violet Skies x

Luck, God or just random shit?

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I don’t know if I believe in luck.  I stopped believing in God as a teenager when I saw the suffering in the world and learnt more about science and history.  I then liked to believe in everything being made from energy and read a lot of books like “The Secret” that talked about putting positive energy out there to get the same back.  Similar to Karma in what comes around goes around.

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I still have a fondness for churches.  Here’s Hallgrimskirkja in Reykjavik, Iceland

Energy and Karma

The energy, karma and positivity mantra was the way I always lived my life.  Some people believe in God but I have liked to believe in the ancient energy of mother earth, not in a chanting naked around Stonehenge way, but the idea that we’re all made of energy always seemed more scientific and therefore believable.

Violet is born

Violet came along and we were told at her 20-week scan about her heart defect and that it was bad luck.  She was an undiagnosed breach baby and I had her naturally afterwards we were again told “oh you had very bad luck there”.  Then Violet got her heart fixed by surgeons at Alder Hey hospital and all the time we channeled positive energy.  Other family members and friends prayed for her in a multitude of different faiths.

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The Priory in Cartmel a stunningly beautiful place

Her surgery was a permanent fix.  People told us how lucky she and we were that she survived but we thanked science and the talented people at Alder Hey.  We continued to think in a positive way and raised funds from our belated wedding reception for Ronald McDonald House to thank them for their support of us in providing accommodation when Violet was in hospital.

Violet sick again

Then when Violet got sick again being admitted into Manchester Children’s Hospital we continued to channel positivity and friends/family prayed again for her.  After just over a week she seemed to turn a corner, we rejoiced and thanked everyone, mother earth, God, everyone’s prayers were answered…but then she suddenly died.  When we got her post mortem results, and then over 18 months later an inquest verdict, to be told she was just very unlucky and she died from something so extremely rare that no one could believe it.

Arthur

We then got pregnant again with Arthur our rainbow and were told at his 20-week scan that he had irreparable brain damage and once again told that we were just very unlucky again.

Karma is fake

Now if I was to believe in karma both of these things should have been lucky instead. I’m the person that buys food for random homeless people and sometimes helps them even further, for example I bought a homeless guy a sleeping bag in winter when he was sat sobbing because someone beat up and robbed him.  Over the years I have raised thousands for charity.  I’ve also only ever had rescue animals and do the middle class thing of sponsoring a child in Africa, so whilst I don’t do this as a quid pro quo or usually tell people whenever I do something kind, I should have a lot of good karma saved up right there. So I think the loss of my two children shows this karma thing is pure nonsense as for luck well….

As for God

As for God…I know lots of people who have lost children and are comforted by their faith. I on the other hand can’t believe in anyone or anything that can cause that kind of pain for anyone.  The pain my child suffered in hospital in the weeks before she died, and that of other children suffering in hospital too, means if there is a God then he is a cruel unkind one, so why worship him/her?   I actually in a way admire those child loss survivors who do still believe, as they’re certainly stronger in their faith than I am.

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We still light candles for our babies when we travel just in case – here’s the inside of St Ann’s Church in Manchester the epicentre of the city

Positive thinking

I still try to think positively, as it helps me to cope day to day but I do it more because I think that Violet wouldn’t want me to be upset or negative and me being miserable and negative isn’t going to bring Violet and Arthur back. I also now have the adorable Aurora to care for so need to be the best version of me for her sake.

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An autumnal walk in the park with colds and coughs hoping the fresh air does us good

Kindness and compassion

I believe kindness, compassion and good manners aren’t exclusive to those who are religious and my experiences over the last few years have shown me that often these qualities can be missing just as easily from a religious person as they can be present in an atheist.  I like to treat people with kindness and respect regardless of who they are. Blame my mother for this one as she clearly raised us well.

So to summarize I’m not sure what I believe anymore and maybe as one of my extremely clever friends said, “perhaps life is just a lot of random shit that just happens and if you survive then you either learn to deal with it or you don’t end of”. Not quite as eloquent as Forrest Gump’s “life is like a box of chocolates” but I can really identify with my friends version.  If religion is how you learn to deal with life’s challenges then good on you, it’s certainly better than turning to addiction or not coping at all.  Each to their own and I think child loss survivors need to push on anyway they can.

How do you cope with things or spur yourself to carry on beyond what you used to believe was your limit?

Love Sarah

Always Violet Skies x

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

Growth

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When I was pregnant I remember strangers would tell me “oh your life will change once the baby comes”. “You’ve no idea of the impact it’ll have & how much you will grow as a person”.  Well they were totally right as no one prepares you for the shock of parenthood but what people don’t realise is the really extreme sport form of parenthood is caring for a sick or recovering child or baby now that has a real impact. Not to mention the loss of one but that’s another change entirely and I wouldn’t describe that as growth at all, that’s more like having an amputation but I’m not talking about that now.

Healthy newborn

It feels strange to us to have a “normal” healthy newborn, as with Violet we had to give her specialist care because she was recovering from open heart surgery. So in her early years we couldn’t lift her under her arms, couldn’t wind her over the shoulder, she couldn’t do “tummy time” and we couldn’t touch or rub her chest or tummy at all because of her chest wound and broken rib cage. Anyone who’s ever had broken ribs will understand the pain she would have been in during the first 8 weeks while they healed not to mention all the surrounding muscle tissue including her heart. For a good while we also couldn’t bathe her either bless her.

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Winding Aurora over the shoulder

Last time with Violet as a newborn all her energy from milk consumption in the first few months went towards healing her ribs, heart and muscles from heart surgery so she didn’t really grow or gain weight at all in her first few months of life. In fact she couldn’t even be plotted on the normal growth chart until she was about 6 months old!

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A teeny tiny Violet in Alder Hey Hospital

Success measured in pounds

This time round despite us feeding Aurora less than we did Violet she is piling on the pounds, rapidly jumping up the growth chart percentiles as a result every health professional so far that has weighed aurora has exclaimed how well we’re doing as new parents, whereas with her sister we were frowned at, interrogated about our feeding skills & had to keep meticulous written feeding records we could show them as “evidence”.  Violet fed every 45 minutes for weeks & Aurora feeds every 1-1.5hrs & sometimes at now 4 weeks old she can go a whole 2.5hrs between feeds but we’ve not had to keep records for Aurora.

Reassurance

You’ve no idea how much reassurance growth and weight gain gives you as a new parent. Assurance that despite the tears, occasional vomiting and lack of sleep you’re doing exactly the right thing. With Violet half the time we were made to feel as though we were failing, as she didn’t follow any “normal” growth trajectory, whereas this time the same (if not less) effort is getting us much better results on the growth chart.

We now realise how brilliant we actually were with Violet in looking after her complex care needs and managing to look after her well, despite everything being 10 times harder for us, than we now know it is for those with a healthy newborn baby.

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Violet at a week old still at Alder Hey Hospital after open heart surgery

Sick baby is a challenge

Immediately after Aurora’s birth the midwife asked Daddy to change the first dirty nappies, that some of you will know contain the challenge of Meconium deposits, (for any novices out there that’s sticky black, tar like poo) and she exclaimed “oh this will be an experience for you” but it was super easy for him compared to when he changed Violets leaning into an incubator carefully cleaning around the various wires and tubes that were keeping her alive. So not that I want to jinx anything but it seems as though Violet really did grow and develop us in even more ways than we care to realise. Hats off to other parents of challenging or poorly babies as we now realise again just how many medals and pats on the back you deserve! You are truly amazing and don’t be disheartened if your baby isn’t jumping up the growth charts. Don’t let health visitors & others make you feel you’re not doing a good enough job, as caring for a sick or recovering baby is a challenge beyond extreme so don’t allow them to compare your super hero baby to other “normal” healthy ones.  And those other new parents whose healthy babies are climbing the growth charts like our Aurora is you’re not too bad either! Keep up the good work & remember not all growth is easily measured.

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Aurora at a week old enjoying the sunshine outside

Bereaved parents

To those bereaved parents there are no words and I’m sorry you’re reading this, as I completely understand that when you hear people talking about the tiredness & stress of parenting you know you’d happily agree to anything to get your baby back. I have been there. Big hugs,

Love Sarah

Always Violet Skies x

What a difference a year makes?

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Today is the official birthday of our baby boy Arthur George who was born sleeping at 22 weeks of pregnancy.  Legally he doesn’t exist as he has no birth certificate or death certificate as he didn’t draw breath.  If he had he would technically have been alive.

TFMR

He was a termination for medical reasons known as TMR and it was the hardest decision myself and my husband have ever had to make (read more about it in this earlier post). We knew it was the right one to make as he wouldn’t have survived to full term passing anyway around 30 weeks so we felt it was the kindest decision.  We still wondered and worried as to whether we were right.

Already grieving

We were still grieving the loss of Violet and then felt as though we were burying our last little bit of hope when we said goodbye to her brother.  We entered a period of darkness even darker than we could imagine. The little flicker of hope we had extinguish completely when we were informed there was a 50/50 chance of future seriously ill babies like Arthur.  A few months later we got the surprise news of another pregnancy.  A pregnancy fraught with worry, stress and anguish as we wondered if once again the light we thought we could see at the end of the dark tunnel was in fact yet another high speed train set to derail us once again.

Aurora

Now exactly a year to the day we held and said goodbye to our little son I’m holding another 5 week old little daughter, Aurora.

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Aurora at 3 weeks old.

We named her Aurora as it means “Goddess of the Dawn” and “Light”.  We thought this was beautiful and had special resonance for us as we now can start to see daylight again through the fog.

Arthur

Happy birthday to our little rainbow Arthur George who taught us to dream and hope again after the loss of our first precious daughter Violet.

He also made us more determined to change more babies lives by raising more money for Violet’s cardiac surgery fund at Alder Hey Hospital. We set a date for the Violet Ball at the end of this month, 29th September at Radisson Edwardian hotel in Manchester you can get more information here.  There are tickets still available and we are looking for raffle prizes too so if you can help please get in touch.

Love and thanks

Sarah xx

Always Violet Skies

You might be interested in these blog posts –

Somewhere after the rainbow

What happens when you get your rainbow

Mothering after loss

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

AvMA a virtually unknown charity

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Most people have never heard of an amazing charity called AvMA – Action Against Medical Accidents, probably because until the worst happens you have no need to seek them out.

Introduced to AvMA

We were introduced to this organisation by the Manchester coroners office, when we were first informed that there would be an inquest into our daughter Violet’s death at Manchester Children’s hospital.

The coroners team said it was highly likely that the Manchester NHS trust would employ their own barrister for the hearing, when it finally happened, and that they wanted us to feel supported, as though someone is on our side. They said they didn’t want us to be bullied by the trust’s representatives and that an organisation called AvMA might be able to help.

Legal aid?

You may now ask “well what about legal aid?” It turns out that no matter what your financial situation in this circumstance legal aid is not available for an inquest hearing.  Can you imagine the additional heartbreak and stress for anyone who is grieving a loved one and believes their death might be because of negligence or an accident but has no free legal support?  We were quoted upwards of £1000 by several solicitors to pay for legal advice and support for the inquest.

No win no fee?

You may ask “what about no win no fee” though but this also isn’t available for a coroner’s inquest as this hearing looks solely to find the cause of death not to apportion blame or result in any type of compensation.  In order to get a pay out you would have to have a separate legal proceeding in front of a judge rather than a coroner and this would be after the inquest and is a separate legal action entirely.

AvMA

AvMA provides free independent advice and support to people affected by medical accidents (lapses in patient safety) through a specialist helpline, written casework and inquest support services. They can put patients in contact with accredited clinical negligence solicitors if appropriate. They also work in partnership with health professionals, the NHS, government departments, lawyers and, most of all, patients to improve patient safety and justice.

Our case

For us it meant having a trained barrister examine all the documents associated with Violet’s death and care whilst in Manchester Children’s hospital. This proved invaluable to us as she requested certain things we hadn’t noticed were missing, such as when we asked for a copy of Violet’s medical records the hospital hadn’t included any of her X Ray results, of which there were many. We then had time to request them ahead of the hearing.

Violet in Children's hospital MCR
Violet in hospital watching TV

Judy, the barrister that volunteered her services to us, was amazing. We had a conference call with her a few weeks before the inquest and were pleased to see that she’d pulled together a list of her main concerns that all tallied with ours. She had done extensive research, including combing through not just the post mortem report but also the medical reports and all of Violets notes (that we couldn’t bring ourselves to sift through again). She also consulted various medical professionals she knew to get their advice on things.

Support during the inquest

At the inquest itself both Julia the representative from AvMA and Judy our barrister were amazingly supportive. Judy asked all the questions we wanted and cross examined some of the witnesses, the various specialists and consultants responsible for Violets care while she was in the hospital. We passed Judy notes from the table behind with any additional questions that came to us while they were giving evidence, and before the coroner had finished with a witness, Judy always double checked with us that there was nothing else we needed to ask.

Saved further emotional trauma

I was originally instructed by the coroner to read out the police statement I had given immediately after Violet died and Judy said she could ask for me to be excused from doing this because I was heavily pregnant and the additional stress it would cause.  We didn’t even realise this was an option and the coroner said he would admit the statement to the records as a printed document instead.  This saved me having to undergo further emotional distress on the day.

Violet on 26th Sept 2016
Violet playing with her balloon the morning of the day she died

Outcome

Ultimately the inquest couldn’t bring Violet back and we got some answers but not really the resolution we wanted. However I’m not certain we would have received these same answers if we hadn’t have had AvMA and Judy helping us. It was a traumatic day with lots of tears, so I doubt we would have had the strength or wherewithal to ask so many questions ourselves. Their help and support at what was an extremely vulnerable time for us proved to be priceless.

Legal expenses

Judy and AvMA only invoiced us for their expenses, which totalled less than £200, including travel costs from London and an overnight stay, so when you consider the thousands a barrister would normally charge this was a bargain. We’ve since given a larger donation to the charity too, so we can help them to help someone else like us who find themselves in an impossibly heart wrenching situation.

Caring charity

AvMA operate as a charity offering support to parents and families like us whose loved ones have died or been seriously injured because of what might have been a medical accident.  This will be the hardest most traumatic time in their lives and as a result they are certainly in need of support, especially around something that could result in answers, justice and in the case of proven negligence, when someone is seriously injured, later on a possible future financial payout too, that could make the difference to quality of life.

I know this charity isn’t as attractive or as immediately heart tugging as a animal, Children’s charity or a cancer cause but rest assured they can make a huge difference to people’s lives at a time when there world has just ended.  When they are already struggling to deal with the grief and shock of losing someone, in our case our 15 month old daughter.

It won’t happen to me…

You never think this type of thing will happen to you. That one day your perfect little life bubble could burst and you lose a child or someone close to you but if this happens then you certainly need legal support from someone like AvMA as life at this time is overwhelming and devastating enough without adding a looming inquest to the list.

If you can afford to donate to this amazing charity, even if a small one, then please do so as you could help someone like us who has said goodbye to their child. If you’re a legal professional and would like to donate time or expertise to work with the charity to help someone like us then please do take a closer look as we’re so grateful to Judy for giving up her time and expertise to help us.

Barristers donating time

Judy explained to us that she understood a little of what we had gone through with Violet, as her daughter had been premature so she had spent lots of time with her in hospital and luckily she was healthy now but she knows how scary it can be to be a parent of a sick child.  She said she can’t begin to imagine then losing them and then the stress of the coroner deciding to launch an inquest into what happened too.  After reading our case she felt compelled to help us.  A truly wonderful lady and we will be eternally grateful to her for her help and compassion.

Here’s a link about AvMA please take a look and consider giving them some support if you can

Thank you

Sarah, Pat & Angel Violet

Always Violet Skies xxx