"You Light The Skies Up Above Me, A Star So Bright You Blind Me" Remembering all our precious children.

[fioled]

For my beautiful baby Anabelle Violet, loved and missed to the moon and back, always xxx How hard we wish that you were here baby girl.

Twinkle twinkle little star,
Up above the world so high,
Like a diamond in the sky.

For all our babies and children, big and small xx

Night, MrsK. Don't be too hard on yourself, having been in that situation ourselves, you always hope for a miracle.

I just think if we had taken Mia to a different hospital, things would have been different. If A&E hadn't been closed, if they had made different decisions, if they had actually followed procedures, if they had read all the notes and information... Each of these closed off her chances a little more. And we are where we are. Without her.

Mias It's so hard. Thinking of you today and hoping that you get the verdict you deserve xx

MiasM - those thoughts are awful aren't they? The 'what ifs' and the 'if onlys' - they churn around in your head until it feels like you will drown in them. The only conclusion I have come to is 'we all did our best with what we had got at that time.'

If only.....If only...round and round those awful feelings go.

Remember 'One foot in front of the other and dont forget to breathe.' xxxxx

The clarity of hindsight can be a incredibly cruel thing Mias, and the what ifs a torture. Thinking of you today and, as Matilda says, hoping that you get the verdict you deserve.

Thinking of you today Mias and sending you strength and love x

The what if's ........ I read an article recently where a child's acute liver failure was cured by a new procedure. I don't know if the circumstances were exactly the same as Cole's, and I knew the day would come when there would be treatment breakthrough's. But by God it was difficult to read. Another what if to add to the pile .....

Hiya Ilike.

Same here with any advances in heart surgery. Its so rubbish. Last week DGS Lewis went for his appt at hospital. Last year two different doctors thought they heard a heart murmur. Doctors verdict was that he had a healthy heart and there were no worries or problems. Then my wonderful friends DS (who was born with a hole in his heart) was given the total all clear from the hospital. The hole had healed itself. He is 11 now so it has been a long, scary road for his Mum.

I was overjoyed for both boys but so, so very envious. Kept thinking to myself how life is not always fair and how I wish Gareth could have lived. xx

YY, Ilike, shabba and MrsK.

With Aillidh, she had a genetic mutation within her AML, called FLT3/IDT. She did not remit of this mutation after her first round of chemo, even though she was in morphological remission. This was utterly damning.

I read many studies, after she died. Children who present with this mutation only have about a 19% chance of survival past 5 years, even with transplant. Many studies, all with horrendous stats. And I know personally one girl from who unit who had the same, relapsed a year after successful transplant and died and came to know the relatives of several more children from A's FB page. One is the sister of a 22-year-old woman who had the exact same two mutations A had. She had a sibling bone marrow transplant, successful, then relapsed after 18 months and died of infection from the first round of chemo to remit her again (very common as the chemo is so harsh, 5-10 days straight of 2-3 drugs). Her sister told me of those they came to know with AML in the 2 years Mandy was ill, only 1 is still alive.

There has been very little progress in successful treatment of AML for those who present with certain, quite common genetic mutations (FLT3 is the most common among adults with AML).

Two drugs have failed in Phase III of trials. Another two are being developed.

She ran out of time.

I feel like the rest of my life I will always be ultraconscious of time.

Mia, shabba's right: you did the best you could for your child at the time! ((()))

My bereavement counsellor phoned me today and told me I am doing really well. She is really lovely but I almost wanted to say "I'm doing well? Fuck, I'd hate to be doing badly!"
And I hate people feeling sorry for me too, matilda. But nonetheless, I like people to know about Sylvie-Rose. And if they know about her, then they feel sorry for me. Can't win.

Mias was thinking about you today xx

No you can't win chip. I feel panic-stricken if I think anyone is about to ask me how I am or to mention D and I just change the subject. Then I feel sorry for myself because I feel so isolated because I never get to talk about him! I wish I could be more open about him in RL.

MrsK I too torment myself with the thought that my pregnant friends are glad they know me because I took that terrible card out of the pack, I'm the one in 200, so they can all relax.

Mias Thinking of you today. You've been so very brave.

Sorry not to namecheck everyone else. Sometimes it's so hard to find the words. Especially to those of you whose children were ill. I have no idea what that must be like but it's so clear that you all tried everything, EVERYTHING that was available to you and that some of the "decisions" that you now regret, were not really decisions at all, in that you had no real alternative.

Your thoughts are wonderful, ladies - thank you.

matilda I hate being asked how I am. Such a stupid and intrusive question, although I know I should be generous and be glad that people are concerned. Real friends I will give an answer, but to those who are superficially concerned, I either divert the question or am sometimes somewhat sarcastic - That is an impossible question. How do you really think I am feeling, having lost my daughter? I am bad but if they don't want an answer then they shouldn't ask the question... But like chip, I would rather people know about how much I love Mia, and then feel sorry for me, than not talk about her at all, and I do have a prepared sentence which I can say about her, which makes things easier.

chip it's so weird how people want to mark our improvement on some kind of happiness spectrum, isn't it? And that sometimes, crazily, we feel compelled to measure up. I hope you said to her what you said to us!!

expat, Ilike and shabba watching medical advances which came too late for your beautiful children must be so hard... and yes, time is so very precious, expat. Our children just never had enough time...

mrsK I don't know if you make your friends feel 'lucky'. I think you are probably making them realise how much they love their own children, and help them to appreciate their own circumstances even more.

The coroner will give his verdict about Mia tomorrow. Today was a better day for us, with a strong expert witness who was very clear and convincing about the treatment which should have happened for Mia. MrMia and I also gave evidence. It is still likely to be natural causes, but we now feel we have done all we could in our quest for truth for our beautiful daughter at this point in time, so feeling a little more at ease.

Today the reality of what happened hit me.

I went to Dexters grave on my own and properly just broke down. There has been a lot of tears today. My boy has gone and isn't coming back.

My5boys to you. I know, I really do. There is a dreadful finality about standing at your baby's grave. No, the physical part of him is not coming back. But the most important part of him will never, ever leave you.

Mias I hope the coroner returns the verdict you want. The one thing I will say is that most of us die of natural causes. But some natural causes are preventable and the people who can prevent them, should.
My Dad died the day after he had been to his GP. I phoned his GP afterwards and he said my Dad had not had cardiac symptoms. We found Rennies in my Dad's car and yet my Dad had never had problems with his digestion. But a part of me will always wonder if that GP should have referred him urgently to a cardiologist. Just because it's natural causes does not mean that everyone was as attentive as they should have been.

And oh, when I looked at that news report and saw "a toddler"! I wanted to shout at the screen, but that's not just "a toddler", that's our Mia!
Ds4 asked who the baby was and I said, "That's Sylvie-Rose's friend" because I do feel that they must be friends.

Mias I've come across to send my love. You must be exhausted after these last few days. I've read the report you posted on fb xx

my5 I know how you feel. I call it the foreverness. It hits me in waves, every now and again, even now over 2 years later, sometimes it hits me, so hard it leaves me physically breathless, overwhelmed and broken, that this living with my Belle is forever. of course I always know this, but some days it consumes me completely.

Lovely friends, thank you again. Today the coroner delivered a narrative verdict regarding Mia's death, rather than simply a death by natural causes. While it didn't go quite as far as we had hoped, in that no specific neglect or failure on behalf of the hospital was noted, the most important sentences for us were these - "the serious nature of her condition was not recognised' and "her impending arrest was not recognised". He also criticised the hospital for not having senior paediatric staff on site to take the necessary treatment decisions. Further, under Rule 43, where a coroner can specify actions be taken to prevent future deaths, the coroner requires the hospital to undertake an immediate review into its paediatric care and management for seriously ill children, particularly out-of-hours, weekends and bank holidays.

The inquest highlighted two potential diagnoses of her symptoms - unfortunately, the hospital treated the wrong one. As we already knew, Mia's port-mortem revealed that she had a bacterial growth on her otherwise healthy heart. While very rare, expert witnesses did feel this would have been treatable, if only her symptoms had been recognised... They were unable to give a better prognosis of survival more than short-to-medium term, however. The inquest also showed that opportunities did exist earlier to intervene in Mia's decline, using routine medical procedures, but sadly these were not taken... However, we respect the coroner's verdict, and do feel that he has been very pro-active in establishing the facts around Mia's death.

Love you forever, darling girl. We have tried to do our very, very best for you.

Mias I read your post on FB as well. I was so proud of all of you for fighting for your little lady. I think the verdict was a kick up the bum for the hospital. When you said (on FB) thank you to your Father for working so hard for Mia it made me cry. I remembered my Dad after Matt and remembered silent tears running down his face after the inquest.

You have done your precious little girl proud - well done all of you xxx

I am so incredibly grateful to my father and MrMia too. They have worked absolutely tirelessly for Mia's truth. They both say that they couldn't have done anything else... I was glad that the coroner recognised their work, by acknowledging that the sudden death of a child is the worst nightmare of any parent and any grandparent.

MiasMummy, I think it's very special that as a result of your fight, they wil have to examine things. OOH care at hospitals is always shit, and I hope they do something serious to improve care. I'm really proud of you, and I know Mia is too. You've all worked so hard. I hope that you can have some r&r now, and allow a little time for it to all sink in. xxx

I'm fed up of the 'you're so brave' comments. I actually argued back with someone who posted on my wave of light photo I posted of fb, saying I'm brave and wonderful. I said I'm not brave, that we just survive. I wanted to put more, but didn't want to ruin the photo of light.

Chip, I always think of all your wee ones as Benedict's friends. I often ask him how his friends are doing, and ask him to keep an eye on new babies up there.

my5, it is soooo hard when that realisation hits. But as chip said, he will always be with you, closer then ever.

Can someone post the link to the thread with all the dates on please? It's gone from my watch list. Thanks.x

Oh, MiasMum, all our thoughts are with you. I'm so so sorry for your loss.

I hope this verdict gives you some comfort of some sort, although I know there's no comfort in the world that would compare to having your sweet girl back.

The foreverness is getting to me today. I have to go about life, of course, Aillidh's sister is only 6 and her brother is 3 - getting dinner in the slow cooker, lunch for the wee ones, laundry, etc - but it weighs on me, how she will be 9 forever.

I understand that Expat.

My Gareth - will be a very poorly 7 month old twin baby forever and ever - till we meet again - even though just after Xmas he is 31. My Matt will be a cheeky, loving 7 year old boy who, next June, will be 29.

Im not even sure how that is possible....it feels like a 'trick of time.'

Mias, you did your very best for your beautiful girl, you really did.
And the hosptial will have to improve their procedures now, which is a result. I know you wanted more but you did work so hard for her xx

Miasmummy I echo all the others. You have (you, your family & friends) have battled so valiantly for Mia. It is so very humbling, the tireless love & devotion that you show. I am so glad that you have a new baby to prepare for, as I imagine that there could be an anti-climax feeling, now that the inquest is over. The timing is so right, it can't just be coincidence :) (((hugs))) xxxxx

MrsY the link to the dates is here xx

I'd like to add Aillidh to the list. Her birthday is 19 June 2003. Her remember day is 7 July 2012.

RIP, my sweet little angel!

Just turned off Stand Up to Cancer. As an adult, it would have been hard for me to leave my kids, but I'd have swapped places with Aillidh ANY day, a thousand times, a million times because there is nothing nothing at all worse in the entire world than losing your child who never got to make it to grow up. Nothing at all.