Tommy’s Angels

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

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.

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 and 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 and those answers are being discovered thanks to Tommy’s.

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, 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 and 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 and also 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!

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 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

When Mother Nature has other ideas

For those of you who regularly read my blog or follow me on social media you may know that I have been waiting for the news about my heart since before Christmas (see this blog post if you need a catch up).  Anyway that decision was supposed to be discussed with me this week, when I was due to see my cardiologist about my MRI scan results from last year.

My hospital appointment was on Wednesday, the morning after the night the snow came that caused gridlock across the north west, and meant my cardiologist was one of the many people unable to get into work that day, so, alas again, I am still awaiting news as to what the future holds for my heart and for me.

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Wednesday morning 6am

Initially I felt really frustrated that I still don’t know what will happen and all because of a bit of snow! Then I remembered that this isn’t the first time Mother Nature has put a spanner in the works for me and, in the grand scheme of things, this time I feel a bit of snow is quite a minor one.

Previous Mother Nature surprises have included nightmares such as my first child Violet being born with a heart disorder that was 100% fixed thanks to medical science then only to die from an extremely rare lung disease.  Then I am diagnosed with a heart disorder too, that it seems I was born with.

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Violet’s butterfly in our garden reflecting the warm lighting from inside the house

My second baby was given the all clear as healthy at his 16 week scan to be told at the 20 week scan that his brain hadn’t formed correctly so we’d need a TFMR.  During both of these births medical procedures went wrong and I nearly died.   Then I was told the issues both babies had were probably genetic, inherited from me and after tests it turns out the faulty gene is so extremely rare they can’t identify it as yet (of course it bloody is!).

Then Mother Nature pleasantly surprised us with my third pregnancy, which we weren’t expecting as it was immediately after losing Arthur, and this time it went smoothly producing the beautiful Aurora.  Perhaps she felt she owed me one!

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Aurora watching the snow – her first.

So Mother Nature continually surprises us on a frequent basis so I really don’t know why a bit of snow causing gridlock, on the one day I really wanted to be able to see a consultant, shocked me at all.  I should be getting used to this by now.

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Our neighbours snow covered garden so pretty

I need to remember to a certain extent to “ride the wave” or “go with the flow”, when forces beyond my control come into play and balls everything up.  It really is like the shipwreck analogy of grief, I’ve been clinging to the “I’ll find out about my heart on Wednesday” piece of wood to stay afloat and buoyant for the last month only for it to suddenly disintegrate plunging me under the icy waves once again.  Anyway now I’ve clambered onto the “meh so what” Irish whiskey keg barrel and seem to have recovered again!

All I can say is that if a higher power does exist they certainly have a very dark sense of humour with the twists and turns they deliver to me on a regular basis.

I’m just hoping I get to see my cardiologist soon and that he says I can have a keyhole procedure in the not too distant future.

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Good job the snow is so pretty.  Can you spot the birds?

Hope none of you were adversely affected by the snow and scuppered by our good old Mother Nature.  Keep warm.

Big love

Sarah x

Grief is like being Ship wrecked

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

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?

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

“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.

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.

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

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

 

New Year learning and growth

Starting a New Year can give people much needed motivation to make changes in their lives and lots of people look to make resolutions for what they will do differently this year.  This “new start” can be extra stressful and upsetting for those who have experienced child loss or indeed perhaps the loss of a different close loved one too.

The New Year marks another milestone in your personal journey of loss.  Another year without them.  Another year where you are a year older but they won’t age at all.  Another year where you won’t hear them laugh, celebrate a birthday or just hold them again.  Our loved ones are frozen in time and the changing year reminds us that the rest of the world is moving on without them.

The last 2 New Year’s were extremely difficult for us as the one thing we wanted to be able to change – to bring our children back – we just couldn’t do.  The year before that we also found difficult in a different way because that was the year I nearly died in childbirth and Violet had open-heart surgery at the time we thought that was our toughest year but we had no idea what was to come!

How can you possibly have New Year’s resolutions when the one thing you want to change you simply can’t change or control ever?  Instead I learnt to focus on looking at what I had learned in the past year and what if anything I could grow from.  Was there anything positive I could build upon and develop for the following year?  It really helped me to recognise the negative and bad things but also to then try to move away from them to focus on the good.  To build on those instead.

So here in public for the first time are the things I have learnt from the last 3 years forgive the brevity with summaries as otherwise it’d be a novel…

2015 – Key experiences were getting married, father-in-law dying suddenly, difficult child-birth (both nearly died, spent weeks in hospital & Violet had open heart surgery to save her at 4 days old)

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Violet in Alder Hey awaiting heart surgery at 2 days old

What I learnt…

  • Sometimes positive thinking can help to get you through.
  • Small can be very mighty indeed.
  • Science is amazing.
  • Even the cleverest most experienced people make mistakes.
  • Always trust your instincts.
  • Children’s heart surgeons really can be miracle workers and are near to God’s. I worship one called Mr Prem and still do.
  • Alder Hey hospital is amazing.
  • Ronald McDonald house charity is amazing.
  • I am very lucky to have such a close family – brother and sister the best in the world
  • My mum is a legend.
  • I made the right decision marrying my soul mate who turned out to be the best father and husband ever.
  • I have fantastic friends.

2016- Key experiences were travelling the world with an infant, belated celebration of our marriage and then daughter dying suddenly at 15 months.

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Violet watching the Snoopy film on Singapore Airlines on way back from Bali

What I learnt…

  • Always give back to those who have helped you – we raised £1,000 for Ronald McDonald at our wedding reception.
  • Travelling with a baby is amazing everyone should do it, although only visit places where you can drink the tap water until your child is old enough to know not to swallow water in showers or bath.
  • Your life can change in a heartbeat.
  • I would willingly give my life to save my child but I wasn’t given that choice.
  • There’s nothing more precious than family.
  • Sometimes doctors & specialists don’t have all the answers
  • All the positive thinking and prayers in the world sometimes can’t help you.
  • You only know your true friends when your world ends.
  • Child loss is a pain like nothing else.
  • You think you knew pain and misery before but you were wrong oh so very wrong.
  • My husband is the most amazing person in the world.
  • Focusing on helping others can help you to relieve your own pain.
  • Setting up fundraising can help you to try to take back some kind of control.
  • Knowledge really is power. It’s very hard not knowing all the answers or information or why’s
  • Some friends go out of their way to support you they are worth their weight in gold & others crumble by the wayside.
  • Family is everything.
  • Time is the most valuable commodity there is so make the most of every day.
  • Love never dies

2017 – Key experiences were a rainbow pregnancy, loss of our son through TMR, being told I probably have a genetic defect; having a hole in my heart diagnosed & then a second surprise rainbow pregnancy at the end of the year.

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Arthur

What I learnt…

  • You should value your health more than anything.
  • Never count your chickens before they’ve hatched or celebrate your baby before it is born.
  • Hope can come in many forms.
  • Child Bereavement UK are amazing.
  • Rainbows can reappear as fast as they disappear.
  • A dog can bring you so much joy and unconditional love when you really need it.
  • Child loss changes you as a person and that change is a permanent one for better or worse.
  • The old me died and was buried with my daughter in September 2016 no amount of trying will bring her back.
  • You have to put loved ones before everything else but not before your own health.
  • Kindness is everything.
  • Just because a baby is small doesn’t make it any easier to birth.
  • Saying goodbye to a baby you never really knew and that gave you so much hope for the future is very hard.  Choosing to say goodbye early is even harder.
  • Distractions are invaluable.
  • Sometimes you can’t understand or fight genetics
  • You can try hard to plan things but often nature finds a way to surprise you
  • Pregnancy is stressful but even more so when you’ve experienced child loss
  • You are not alone others out there have experienced the same thing
  • Always stand up for those who are unable to fight.
  • Always do the right thing for you and other people even if it is the hardest choice

2018 – Key experiences were a successful rainbow pregnancy, finally answers in inquest from the coroner about Violet’s death, birth of our third child a baby girl, a house renovation/extension, the first Violet ball for charity & my Nan passing.

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Me and a tiny Aurora

What I learnt…

  • Seize control of what you can control and smile and breathe with those things you can’t.
  • If you feel part of your life is uncontrollable then begin a new project or task you can control.
  • What will be will be
  • Go with the flow those hippies knew something
  • Tommy’s baby charity is amazing.
  • Stand up and fight for those who cannot
  • Sometimes the best decision isn’t the easiest
  • Helping to advise and support others who are also suffering in a similar way can help yourself too
  • Sharing is caring
  • Sometimes there are no answers or explanations as to why
  • Sometimes all you need as a listening ear and some chocolate
  • Caesarean sections aren’t the easy childbirth option but it was the best option for me
  • Breast isn’t always best when your baby has other ideas. Alive and feeding is best no matter how they are fed.
  • Being a mum of three when you only have one child to hold and nurse is hard.
  • Tiredness has a whole new meaning when you’re the mum of a new-born and have experienced child loss too
  • Being a new mum is difficult. Being a new mum who has watched her first child die and had to feel her second one die inside her is near impossible stress wise but at least I finally have a child who is alive and healthy
  • To live a long, happy, healthy life is the best we can ask for. I hope I’m as lucky as my Nan who was in her nineties.

You can see here clearly that when unimaginably stressful events happen in a year the number of “learnings” or developments increase, so try to remember this if only once a year.  There is something constructive that comes from the most upsetting and distressing of situations if you really look closely.  Remember and recognise what an achievement it is to be a survivor and what you have been through.

It is also possible to squeeze out a tiny bit of happiness from it all too.  As the legend that is JK Rowling wrote for Dumbledore ““Happiness can be found in the darkest of times, if one only remembers to turn on the light.”  So flick that switch or light that flame even if it is on a very tiny candle your baby or babies will thank you.

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Light that flame

If you only take one thing away from this and repeat it as a mantra in the mirror every morning throughout January it should be this…”You are amazing”.

Love Sarah x

A broken heart

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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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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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.

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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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

When you finally get your rainbow baby what then…

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?

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.

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 one 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?

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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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

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?

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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 x

Luck, God or just random shit?

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

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 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.

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.

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.

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…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

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

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?

 

 

 

 

I used to love September

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 x

What a difference a year makes?

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.

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) but 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.

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 and felt our 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.

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.

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 and 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

 

AvMA a virtually unknown charity

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.

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.

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.

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 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.

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.

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.

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

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.

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.

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.

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.

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 xxx