It all began a year ago…

I cannot believe that it has been a year…a year since our 20 week scan, a year since everything became so temporary and fragile, a year since our lives were turned upside down. Last year, on this day we excitedly made our way to the hospital as a little family unit to see who our 5th member would be. According to a tonne of random people I met I apparently already had the perfect family with “one of each”, and so it really didn’t matter either way. I had secretly pinned several funny ideas to announce it to the world and couldn’t wait to keep our tradition of going to buy them their 1st outfit on our way home…we were literally living the dream, loving life, excited for our 3rd child..planned and so very much wanted by all.

Within a few moments this all changed as I was quickly reminded that the 20 week scan isn’t a gender revealer but an extremely thorough look to see if baby is fit and well (baby was not fit and well) Silence filled the room, she seemed to be taking far longer than others id had. My grins and excitement turned into an awkward laugh which turned into worry and anxiousness as she left the room the room for “a second opinion”! It turned out there seemed to be an abnormality on her heart, a tummy was too small and part of her brain was underdeveloped. We were referred to the cardiac specialists at LGI for further scans and fetal medicine to investigate. We weren’t charged for the pictures and looking back they knew more than they were saying as she strangely asked “what shall we tell your children” – “you tell us all what we are having and we will take from there” I replied!
As our family eagerly awaited the news we faced the challenge of repeating this news to them and how much we would tell other people – we decided to share the good and await to see how bad it was. I posted this to facebook and had hundreds of likes and congratulations. I felt a bit of a fraud not telling them everything but to me there wasn’t anything certain to tell and why would you anyway until you were clear and had digested it all.
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And so I walked around as your average happy preggo lady until we were summoned to the LGI …
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2 days later after much worrying and fake smiles (I did that A LOT) I had convinced myself that everything would actually be okay and that it was all a mistake, a simple error as baby was in a funny position! We met the cardiologists with Naths parents to see what the delio was – and….well… it turned out that everything was NOT okay, in fact far from it. After taking us into a small room furnished with comfortable seating and tissues they broke it to us – She was diagnosed with a rare and very severe form of Congenitial heart disease and we were told “IF she lives she will need 3 major surgeries before 5 and then these would only be palliative”…What did they mean “IF she lives” you don’t have a baby ever thinking they’re not going to live. I honestly couldn’t breathe, I couldn’t understand it all and it left us feeling empty, lonely, gutted and complete rubbish. I struggled to tell people the diagnosis as it pained me, I finished work early as working with healthy babies and happy mummies pained me at every class and every comment on my bump, question of my pregnancy was a reminder that there was nothing rosey about it and that IF our baby lived we would be enduring months of hospital visits and open heart surgery, never knowing if she would survive it. Oh how we had taken healthy babies for granted!

My experience has caused me now to squirm a little when I see plastered over face book peoples glee about there 20 week scans and what it will be, I get unnecessarily cross that they seem to disregard the importance of it all and that I now see everything as so fragile..no guarantees! I know my experience is rare and I know that everyone has the right to celebrate pregnancy and birth in their own way…I wouldn’t have thought any different if a year ago we’d have gone in and out as before but a year ago I didn’t know about CHD or Trisomy 18, I didn’t know the hell a bad scan can create, grief for a baby not born, birthing a baby I never would know. This year has been terribly hard, a roller coaster indeed a lot like oblivion at Alton towers..plummeting fast down and down into the unknown!

Up until now the anniversaries we have relived have been the happy ones but today not so much. Today is one of those anniversaries that cuts a little deeper and makes it all feel raw and unfair again, despite my ongoing battle with grief and pain, I will say that I am glad I chose to go through it with a smile as much as possible, with a hopeful attitude and a sense of humour; it has helped us become closer as a couple, remain fairly sane and deffs helped us to survive the unknown.

I still wish to this day that that wasn’t our 20 week scan and that people today understood my pain more and how we grieved the weeks and months following that news. I wish people knew how I smile when I’m really aching because I don’t know what else to do on days like these, or that I am exhausted with the year we have been through, so mentally and physically drained! But we are here, we are alive and have a good life together (still the 4 of us) the hearty problems started a year ago and so did our determination to live life to the full, stick together and look for the heart warming, joyful moments despite them.
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16 Comments

  1. April 29, 2015 / 3:45 am

    Im so sorry for your loss. Your positive attitude is a reflection on your strength as a mother. Hugs to you.

  2. May 1, 2015 / 12:15 am

    I also am the mother to a child with CHD. I’m so sorry for your loss. My son was born with hypoplastic left heart and double outlet right. You mentioned the 3 staged surgeries so I’m thinking maybe that’s what your little one had too? I also get SO irritated when people don’t even consider how important the 20 week scan is. It isn’t just about the sex. You are so right.

    • May 1, 2015 / 7:26 am

      Its such a difficult thing to hear is in it? all the excitement seems to be knocked out of you for a while. How old is your son now? Yes she was diagnosed with HLHS, DORV, a large VSD, coarctation of the aorta, (some heart abbreviations there you’ll understand) and a couple of other things too!

      • May 1, 2015 / 4:07 pm

        My son will be 3 at the end of June. He ended up not being a candidate for the second surgery because of pressures so he was transplanted at 6 months old.

  3. Not A Frumpy Mum
    May 2, 2015 / 9:40 pm

    Oh my lovely, I am so sorry for your loss, I can’t even begin to imagine how hard the past 12 months must have been, but what a wonderful and positive attitude you have. Lovely to meet you today xx

    • May 2, 2015 / 10:23 pm

      Thank you! And it was lovely to meet you too Jo. It has been very hard, still is quite often but I just keep swimming 🙂

      • Not A Frumpy Mum
        May 2, 2015 / 10:24 pm

        I think sometimes that’s all you can do, you are a very inspirational lady x

  4. May 3, 2015 / 8:17 pm

    Mary you are an inspiration, trying to bring joy into your family life after such a sad loss. Your children are beautiful and I imagine baby Poppy was too. It was lovely to meet you, I wish you all the best for the future.
    Lorraine x

  5. June 5, 2015 / 10:10 am

    So sorry to read of your loss. I can’t even begin to comprehend how you must feel. Hugs xx

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