A love story : Living without my beautiful red-headed Mia

[MiaAlexandrasmummy]

This love story began before Mia was born, intensified when she entered our lives, and it will continue to burn strongly forever. Mia is my red-headed flame, my sweet pea, my noisy sprite. Mia is joy, she is love, she is every good thing you can imagine. And I am so incredibly proud to be her mummy.

Yet she is gone. Mia died totally unexpectedly last October at the age of 13 months. Impossible, but true.

We miss Mia?s cuddles, her weight and her little legs curled around us, her face against our cheeks and her warm arms around our necks, the soothing pats on the back that she would give us as we in turn patted her. She was intimate, coming to us, arms raised, for a reassuring cuddle, but then with a smile, content she would wiggle free, independent and inquisitive about everything around her, exploring her world, looking in cupboards, peeking between the banisters as she climbed the stairs and just revelling in her existence.

I have tried to estimate how many times a day we kissed Mia. Picking her up, putting her down, dressing her, feeding her, washing her hands, just because? it must have been hundreds. Equally, we always made a point to tell Mia every day just how much we loved her. We know she listened.

I cannot begin to adequately describe the love that we have for our little girl. I can only ask you to imagine the most perfect feeling of love and warmth that you can, to double its intensity, and extend it to infinity and you are still not even close to the amount of love that we shared with Mia every second of the her 13 months.

This is her story, and mine, and my reality.

Today was much harder than yesterday. MrMia and I are drained and resigned. Too much evidence and expert witness opinions to say that the choices made in Mia's care were 'reasonable', even though they ended up being the wrong decisions. Certainly, there are acknowledged mistakes and miscommunications, and there is always more that could have been done... So tomorrow we are likely to hear a verdict of natural causes.

It's hard not to feel that Mia's death doesn't matter. It won't change anything. Except the lives of those who love her.

jmf thank you for letting me know about that BBC news page, although we had seen Mia on the regional news last night. (Not all the details noted are correct though.)

Oh, MiasMum!

oh Miasmum I hope you are feeling not too totally blue and full of despair - silly post, I am not sure how to phrase it. I know you have a legal team with you and supporting you but if you want to PM me I have experience that might offer additional support

Whatever the verdict is it will not change the most basic facts that Mia is the most gorgeous little girl, you are MrMia are the most wonderful parents, Mia's love has travelled around the world and touched the lives of so many.
You are brave, humble, inspiring, loving and an aspirational role model, despite your own pain you are always there to help other bereaved parents.
I truly believe you will be one day with your beautiful girl again, time will no longer have meaning and eternity together will be yours.
In Mia's heaven you are already there being with her- and maybe when you are feeling her presence it's a glimpse of that time.
Until that day, I shall think and prayer for you my dear Mia's mummy and pray that your unborn baby will bring light and love into your lives and grow knowing all about his/her most dear sister.
Thoughts and prayers for tomorrow xxxx

Thinking of you today and hope you both managed to get some rest last night. It is draining and exhausting to listen to everything, and think about what could have been done differently.
I too saw Mia's beautiful face on the regional news on Monday. I am sure that the professionals involved won't forget her, and will learn from what happened, and from your courage and dignity in the face of the most devastating loss.

You are all in my thoughts again today x

Mia is popping into my mind regularly this week, as I know she is for many others.

The coroner will give his verdict about Mia tomorrow. Today was a better day, 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.

We now feel we have done all we could in our quest for truth for our beautiful daughter at this point in time.

I'm so sorry for your loss of your beautiful little girl, my heart goes out to you

The words you write about her are so moving. Rest in peace, beautiful Mia

Glad today was better.
Will keep you all in my thoughts and prayers tomorrow and really hope the coroner's decision is just for dear Mia
Xx

Thinking about you today as you await the verdict. As jmf so eloquently said the outcome will not change the basic facts, the love we all feel for mia and your family and the impact she has had on the world. X

Thinking of you, your family and beautiful Mia today.

Dear Mias,

So sorry that I haven't been around to offer support for a while, but please know that I am thinking of you and sending you strength and love. I hope that today has been a good day for you: you and MrMias have fought so hard on Mia's behalf and could not have done any more. I hope that knowledge gives you peace.

With love xxx

I have been following the inquest in the news reports. Having just read the verdict I hope it can start to give you some ease of heart as you go forward in to the next year without Mia.

Dearest friends,

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."

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. He has also told the hospital that they must redo the root cause analysis investigation into Mia's death, as it does not sufficiently address these issues.

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 witness 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.

We respect the coroner's verdict, and do feel that he has been very pro-active in establishing the facts around Mia's death.

For those of you living locally, there will be a report on Mia's inquest on the news at 6.30 and 10.30pm tonight and on the local radio. There are a couple of articles on the BBC website, but they aren't incredibly accurate.

Thank you everyone for your unstinting love and support during this difficult time.

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

I just don't know what to say.

Xxx

miasmummy your post has made me cry. The inquest must have been unbelievably hard for you.

It may not be the outcome you hoped for but it does sound as tho changes will now be made. You should be proud of your strength and resilience, Mia will be proud if you.

I follow your thread but rarely post as i dont know what to say :( but you write so beautifully and your love for Mia shines out.

Thinking of you and sending love and strength xxx

I don't know what to say either, but I have been thinking about you a lot. I hope you can find some form of comfort in that this will save the lives of other children, even if it is so unfair on your family.

You have done the best anyone could do. Your love shines through in your commitment to the painful inquest process and the way you have seen it through. Mia will know this. I'm not equipped to know how but she will. And the things that will be done because of the inquest could be the one percent change needed to save another child. You're amazing. I hope you get good rest tonight.

Miasmummy, you have been so brave pursuing the inquest in order to get answers for you beautiful daughter. I hope you can take some comfort in the knowledge that the hospital will now have to review its procedures, and this may one day prevent another family suffering the heartbreak that you have suffered.

Love to you on this very difficult day x