The Light at the end of the Tunnel?

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Well we’re very nearly there as this week hopefully our nearly two year long battle for answers about what happened to our daughter Violet and caused her untimely death will come to the fore.

Inquest

Ever since she died suddenly on 26th September 2016 we have been chasing hospitals, lodging complaints, hounding for the release of medical records, researching the strange medical terminology and random disease mentions that appear in her post mortem report and waiting for the coroner to finally set a date for the inquest hearing. Finally after over 18 months we got a date and it is this week.

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Will this be the light at the end of our tunnel?  (photos taken beneath a glacier in Iceland)

AvMA

Fortunately a legal charity called AvMA have now agreed to support us with a barrister to act as our mouthpiece during the hearing and she will ask questions on our behalf. We are so relieved about this as were dreading having to question witnesses ourselves. She has also offered to read out my witness statement on my behalf and this has lifted a lot of my dread, as I was worried it would be too traumatic to stand and relive these moments in the courtroom although I know some parents can find this somewhat cathartic.

Questions for barristers

My husband and I spent time this weekend drafting questions for our barrister that we would ideally like to be addressed and it is traumatic thinking again about our precious daughter’s last days and moments. Running through all the “what ifs” in our heads that we know may or may not be answered with any certainty.

Violet on 26th Sept 2016

Stress and worry

The stress and worry about this week has actually given me a mental block to my writing so apologies for no recent insightful blog posts.

I do have lots of lovely more uplifting things to write about and post, involving travel to amazing places but at the moment these seem too trivial and frivolous to me to be able to focus on when we have more serious emotional events looming.

Stay tuned and I’ll hopefully be able to check in with you all in a week’s time having discovered the light at the end of the tunnel.

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

Question time: the questions I dread being asked

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At work events

For those of you that don’t know, I do PR and marketing for a living so that involves at times attending networking events, black tie dinners and entertaining clients. In the past I’ve always excelled at making small talk and creating conversation with new people. I used to find it easy to get a rapport quickly. However now I find myself dreading strangers asking me questions that are usually quite normal to ask when getting to know someone. Questions such as “do you have any children?” or “do you have a family”.

Honesty is the best policy

I then have a choice do I lie and say “oh no I don’t” then the conversation can continue to move along in a light hearted cheerful way? Or do I tell the truth that I have had two children but unfortunately both have died? This honest approach is the one I usually use, as I don’t believe in lying to people, especially when my job is formed on the strong foundations of trust and honesty. It’s all about building relationships.

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Violet at a few months old

The more I practice the easier it gets for me to deliver my “Yes I did have two children but unfortunately they died. I had a little girl who died a year last September at 15 months old and a little boy who only made it to 22 weeks of pregnancy. He died last September because of an incurable brain abnormality.” And “no we don’t know why my little girl died. The coroner opened an inquest into it and we finally have an inquest date of 17th May.” The first few times someone asked me I ended up in tears during the inevitable questioning that ensued afterwards and made my guests feel awkward that they had upset me. Now I have it down to a tee and can deliver explanations, answer questions in the same matter of fact way I tell people about where Randall & Aubin source their fish!

It’s almost becoming natural now for me to talk about it openly at work if I’m ever asked but I worry that people may think I’m cold or detached as I now rarely get upset at all in a work environment. I find myself able to talk about my children in almost a matter of fact clinical way.

Behind closed doors

Afterwards once I get home is a different story as I find I have to have a little cry to let the emotion I bottled up out and if I find myself having to tell lots of different people my sad news at a larger networking event or dinner then it can sometimes can drain me emotionally for days.

I seem strong

People assume because I can put on a brave face for work and social situations that deep inside I’m strong, tough and can cope with anything. Sometimes they then feel the need to share their problems, dilemmas and trials with me, thinking if I can handle losing my children then I can maybe help them too. They don’t realise the tidal wave style flood I’m often holding back under the surface. A volcano more often than not looks just like a still stationary mountain from the outside but inside there’s a great deal bubbling under the surface that no one sees until the big outpouring or eruption, That’s how I feel most days.

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Photo of Pat in Iceland just outside Reykjavik

So yes I may seem strong, calm and together on the outside but you’ve no idea the effort that that can take in order for me to put my “game face” on (I mean that in the together psychological sense rather than a make up one!). Yes I do care about my friends and other people, so do feel you can speak to me but please remember there’s a limit sometimes to what extra stress I can take on board. This is especially the case if your stress in the grand scheme of things isn’t exactly that life threatening.

Cancelling plans

Please forgive me also if I make arrangements to see you and then cancel at the last minute sometimes I get so emotionally drained that I can’t face having to make conversation with anyone.

Thanks for reading,

Love Sarah x

Always Violet Skies

You may find these posts interesting too –

After the Rainbow

Mothering after loss

Making over motherhood