The Ordinary Moments 2016 #2 | Speaking for SANDS

This was me this week when I was invited by SANDS to be a parent speaker at a baby loss training event in Harrogate for Drs and midwives, put on by local charity “Our Angels“, and this weeks Ordinary moment is about me and the 20 minutes I was given to talk about my Stillborn daughter, her limited life and her story.
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It was also an opportunity for medical staff to learn and discuss changes that could be made to care for families who face the loss of a baby either during pregnancy or shortly after.

They looked at grief, how it feels, how people react, how they communicate now and how they want to be able to help more… despite the subject I felt rather detached and found it was all very positive, and yet despite it being positive, it still has taken me a few days to put this post together. I guess  its still harder than I sometimes realise, to relive and remember all the events and all I went through. It was certainly a comfort to have the SANDS group leaders there with me!

I have said before that this is my ordinary now, this my common vocabulary and yet there are times when it all seems so far from the ordinary, abnormal even. And then there are moments like those on Wednesday when I sat there in a room of Drs, midwives, gynaecologists, registrars and GPs and did not feel phased, but rather empowered… it was , like I say, a welcomed opportunity to talk about Poppy, to praise the NHS for what was right, but to be able to also spell out clearly, not in a confrontational way, but in a welcomed way, a lot of errors and areas where we felt greatly let down. I never once called her by name but referred only to her as “our baby”, I think despite feeling okay about it all, welcoming the opportunity to raise awareness and a need for change, I still subconsciously wanted to protect her from the DR’s!!!

“My story begins like any other; with already 2 lovely and healthy children we decided it was time to grow our family and to try for a 3rd…everything was seemingly fine until 20 weeks, when it became clear that there were some serious health problems with our baby. 

…Our Society has turned the 20 week scan into a gender revealer, when here in ours, in that moment it was brought home why we have them and what their purpose is in pregnancy…” 

I then went into details about her CHD, the appointments, a lot of medical stuff and how after an amnio at 30 + weeks revealed she also had full Trisomy 18, and from then, with that diagnosis we began to have to fight for care, fight for her to have life and constantly put across our wishes, because she was termed by them as “not compatible with life”!
I told them how wrong that was and how I despised the term and asked how they would feel to be told that about their child or grandchild?

I spoke of how compassionate the Dr and midwives were when it was revealed through a scan that there was no longer a heart beat present in our baby. I spoke of how it felt to deliver a baby that was sleeping and how hard it was as a new mother to ask them to take my baby away because of the pain that came with looking at her.

I shared with them the blessing it had been to refer us to Forget me Nots hospice and how through them we had gained ongoing support and an awareness of SANDs and benefited from their support! Finally I ended with;

“Just because a baby is medically ‘not compatible with life’, does not mean that they are not compatible with some level of care, with love or a chance to that limited life with their family”
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I was asked following my speech “How many of these have you done around the country” which made me laugh, and not stop since because I thought it was obviously my 1st! But, laughter aside what really impacted me was that many of them there were reduced to tears by hearing my story, by hearing what Poppy had, how she fought and how despite not being born alive, she proved a lot of stats wrong to make it to term with all that was wrong with her. They said I was inspiring and brave, words I don’t like to hear because I just do what I do, and survive best I can!

One Dr in particular stood out to me when she thanked me for changing her views and said “I will never use the term ‘not compatible with life’ again”! It made me smile, it made me feel like I am headed in a direction that is good, that I am doing what I hoped and making a difference for others. I am using what is now my ordinary to help those stepping into the out of the ordinary.
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I always love to share Poppy and I love moments to remember how cute and beautiful she was…I especially love it when I know through my voice she is helping others and changing things for the better. She is leaving her her mark, her footprints, in the world she never stepped foot in!
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9 Comments

  1. mummydaddyme
    January 11, 2016 / 2:54 pm

    Mary I am sat here with tears in my eyes. You should be so proud of how you are using, not only your blog, but your whole self, to raise awareness of baby loss and also honour Poppy’s name too. I honestly find you so inspirational and I bet all those doctors and professionals went away that day really remembering your words. You are amazing. x

  2. January 12, 2016 / 12:14 pm

    I am sat here with tears in my eyes but also a smile as I feel so proud of you. I can tell through your writing that you love sharing your precious memories of Poppy, and how wonderful that your story is starting to take effect in the medical profession. I am so proud of what you are achieving for precious Poppy xx

  3. What an amazing thing to do and what amazing strength you have, I doubt I’d be able to stand up in a room full of people and speak so well and coherently as you must have done. I have participated in a study into improving care for families in neonatal units and I understand what you mean about feeling empowered, I’m glad to have been part of it. Congratulations again, I hope you’re really proud of your contribution. X

  4. January 13, 2016 / 8:02 pm

    I am not at all surprised they were moved to tears, I was just reading about it. It must be hard to go and talk about it in a room of people but I am so pleased to hear how you obviously have changed their views, what an amazing opportunity to give them a chance to think about how they handle the care of baby loss. You should be so proud of yourself Mary, as sad as Poppy’s story is you are making a difference in her name and that is lovely xx

  5. Carie
    January 13, 2016 / 9:14 pm

    Oh what an incredible and emotional thing to do. I’m a little teary just reading this. It was brave and it was an amazing gift to all the people listening to tell them your story and set ripples running across their work. Even if the only person who ever does anything different is that one doctor then what a legacy for Poppy the next time the Dr has to help parents through the tragedy of loosing their baby.

  6. Helen
    January 16, 2016 / 7:53 pm

    What a lovely story and as a midwife I am so glad you are getting this across to them.
    My own daughter died aged three months on the 1st January 2016, she had full trisomy 18 and we did manage to get full treatment for her with no concessions. We didn’t get the ‘incompatible with life’ comments from the medical team but the feeling was there, they felt they were doing a lot for her. I hope she showed them the value of a life, however short, however small and whatever the disabilities. This is what your story of Poppy must have done for the doctors and midwives who heard you speak. I am so sorry for your loss.

    • January 18, 2016 / 12:37 pm

      Thanks Helen – I am sorry that you too know that all too familiar diagnosis, and loss of a child. Im pleased that you got to have some time with her and were treated more equally… I bet it made the world of difference in an already difficult place. I am sure she taught them a huge amount!

      Do you experience much baby loss as a midwife? x

  7. January 16, 2016 / 10:45 pm

    Thank you for having the courage to share your story and you are creating a legacy in Poppy’s name. I am sure that you have made a huge difference in the audience’s perspective of dealing with this very heartbreak situation. Big hug! #TheOrdinaryMoments

    • January 18, 2016 / 12:34 pm

      Thank you Christina. I hope so. And I always love to read people commenting on my posts about her so thanks x

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