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My name is Leanne and I’m 39 years old. I’m mummy to 6 children aged between 3 and 21years - 3 boys and 3 girls. I was in my early twenties when I fell pregnant with my third child..A new partner and a new beginning for me,  that's what I believed anyway.

My pregnancy seemed normal, I had a few early tummy aches and a bit of bleeding but had 3 very detailed scans right up to my due date which didn't show anything abnormal or highlight any issues. Or maybe they just didn’t look for them.

My due date came and went and I finally went in to labour, all seemed normal, lots of pain and a crazy amount of back pain!  I was sent home and told to return later, when the contractions were closer. A few hours later I remember pacing the car park  and being very vocal about things not feeling right. The baby was back to back..that explained all the back pain and slow labour. Phew.

As my waters were being broken and I remember the midwife saying to another that something felt 'squishy'. She spoke to another before continuing
and breaking my waters. Not even then was I sent to be checked. My mum was in the room and clearly remembers them quietly talking but not saying a word to me.

Finally my beautiful baby girl made her appearance. She wasn’t breathing so was taken aside to be given oxygen. Thank goodness they did get her  breathing and quickly wrapped her up and gave her to me, I was relieved. 

That was until I looked at her and I remember thinking an awful thought..she didnt look quite right. Her nose seemed to be larger than average and
her ears looked lower than I had imagined. Her eyes were dark and beautiful but something seemed wrong. I started by unwrapping the blanket and feeling  for her fingers. I was shocked, she had extra little digits! The same on her toes.

By now I was feeling really uncomfortable and almost like I was being so cruel by thinking these things were odd. What was wrong with my baby!?

The most horrifying part of examining my new born baby was when I saw her scalp hadnt formed properly; it almost looked severely bruised.  That's what the midwife had felt when breaking my waters.

She was then whisked away and taken to the special care. I was sat on the bed surrounded by my family..tears streaming, I remember being inconsolable.

I was told she may not survive the night, but as of yet I had no understanding of why!

Ella-mae was born on a Friday..a bank holiday which meant there were no specialist doctors in the hospital that could help us get a diagnosis. We were expected to wait until the Tuesday. Although they threw the words around, I’d never heard of Trisomy 13 and had no idea what that would mean if diagnosed.

Ella-mae was kept in an incubator, I wasn't encouraged or allowed it seemed to spend much time with her. Suddenly on the Sunday she took a turn for the worst and we were taken to another hospital (why did they wait until she almost passed away to do this). I travelled behind not knowing if she would make it. The whole time no one spoke to me about what was wrong or put any steps in place to help me cope with losing her.

Her big brother and sister were kept away and I felt terrible. I just wanted an answer!! So now we were in a bigger hospital but still in an incubator. I was allowed more time to touch her and hold her but I was still completely in the dark as to whether she would live or die. It was just awful.

We had her baptised on the first night at the bigger hospital..because she kept slipping up and down and I wanted to have a least the memory of something warm and loving for us, my children and the family.

Ella-mae had a hole in her heart, roof of her mouth, extra didgets, unformed skull, unformed organs and it seemed an inability to cry which broke my heart! She must have felt pain. One of my worst memories were of her being prodded and poked by student doctors. They were attempting to

put a cannula in her arm and I could see it wasnt working and Ella-Mae looked uncomfortable. I shouted at them to leave her alone!! I’d had enough. I demanded answers and then on the 5th night I finally had a conversation that would confirm her diagnosis of full Trisomy 13 and that babies would
rarely make birth but average life would be 7 days. I was so heartbroken and shocked!!

If I had been told that this had been the likely outcome I would have grasped every single moment, they had no intention of trying to help her live so why not let my baby be with me and let me love her for as long as I could! I could count the times on my hands that I was allowed to hold her, it was so upsetting.

Whilst I had been going through all of this my sister had given birth to a healthy baby girl back in the hospital I had left. On day six of my babies little life I ordered the hospital to let us go back to our hospital and just be as a family for whatever time we had left - no wires, no prodding, no time
restrictions just cuddles and kisses and my family all being together.

We reached the hospital and settled into a family room and got Ella-mae comfortable. I decided to walk across the hall and meet my new baby niece Mia. I remember my sister crying and almost feeling guilty that she had this perfect baby. I quickly reassured that I was absolutely fine and her baby girl was beautiful and cherished by all of us.

I went back to my room and held little Ella-mae, I dressed her in a baby gro, she looked like any other beautiful baby, just perfect. That night i held her in my bed all night. We didnt sleep, she gazed at me the whole night! It was the most wonderful, loving and special few hours of both our lives. I just wished I’d had more of those!

Ella-mae passed away the next afternoon in my arms; peacefully and being held by mummy. I dressed her and held her for as long as i was allowed, which was roughly an hour. I was then given some leaflets and sent home. No support, no one to help me understand what I’d just been through.

Iv carried the pain with me for the last 13 years and always will I imagine. I'll never accept what happened and all the mistakes that were made before and after. I wish I’d known what was coming so I could have been prepared. Prepared my children, my self and been able to be strong enough to
have a voice for those 7 days. Why didnt they try to help her live? Or let me hold her more?

I clung to my newly born niece, I had her with me for every morning whilst her mummy worked for 6 months. Until one day I had a call; she’d been rushed into hospital. She had meningitis. They couldn’t save her and I rushed in to be there for my sister and her children. I saw my sisters aching heart, sobbing uncontrollably in disbelief. It was horrific. Both our girls so cruelly taken away.

We have since both gone on to have more children, we had 2 more girls born close and they have grown up to be as close as sisters. They know that it was their angel sisters that sent them here to live a life that would be so special..and they will guide them always.

Thank you for reading my story.
All my love

Created: 09/12/2019 10:49

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