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Ava Marie, baby with anencephaly

The 10th January 2018 we was so excited to attend our babys 12 week scan, we had had a feeling all wasn't well as we had been having random conversations about things, but still, we never expected to be told the devastating news our baby had exencephaly which later turned to anencephaly.

We made the decision there and than to continue with the pregnancy as we said we wanted baby to decide when he/she didnt want to fight anymore. We didn't want to end our babies life for him/her.

We got told all the way through my pregnancy by hospital and private scans that baby was missing its skull from the top of its eyebrows right to the back of its neck and its brain was exposed, and if it didnt die during my pregnancy or the birth, than it wouldn't survive longer than an hour after birth. So we was expecting the worst the day we finally got to meet our baby.

Every scan we attended we prayed that he/she still had a heartbeat and was fighting strong, and that she was, every time.

We found out at our 20 week scan that we was having a little girl. We had decided early on the name Ava-Marie Grace.

We attended meeting after meeting not only with health professionals but also with the hospice team. Everyone kept telling me we needed to sort out the funeral but I kept dragging my feet. How could i sort my unborn daughters funeral when she was very much still alive and fighting? Something inside me told me she wouldn't die as quick as everyone was saying.

11th July 2018, we went for the c-section to finally meet her. Surprisingly we wasn't nervous or scared to meet her. It just felt right.

I remember them saying she was here and hearing a little cry, something apparantly babies with anencephaly can't do. And I remember turning to my partner Daniel asking him if it was bad, to which he replied no. Which I later found out he didn't actually know but didn't want to worry me. Daniel went to get her checked over while they finished me off and when I later joined her and Daniel in recovery, it felt so normal to be holding our newborn daughter.

We got to the hospital butterfly suite where our 2 other children Harry and Sophia, my stepmum and Daniel's mum was waiting to meet their sister and grandaughter. The hospice team came in with other professionals to help us make memories of our baby. We even got her baptised! Again everything felt so normal as though we had just had a healthy baby. Not once did we think at any point she could leave us.

Ava Marie, baby with anencephaly

It wasn't until everyone had left and it was just us and Ava-Marie, did it dawn on us the severity of the situation we was in. Health professionals came in to help us change her dressing and fit an NG tube and it was then that we realised her head was nowhere near as bad as they thought. It was which filled us with hope that we could maybe save our little girl after all.

The 13th July, we was able to bring our little girl home to where she belonged. Every day we made more and more memories.

We had a few false alarms due to her breathing being irregular and than her having seizures but she always came back from it like the fighter she was. She would always stick her tongue out when she wanted feeding. We found out she was possibly deaf and blind. Babies with anencephaly are also disabled but we started talking about the future with professionals and what help and support would be out there for us.

We was so determined to give her the best life. Daniel was even going to give up work so he could be here with us all caring for her.

On the 20th July, we managed to get an appointment at Alder Hey hospital to see a neurosurgeon about possible surgery. We got told surgery wouldn't be a choice as she had irregular breathing she wouldn't make it off the life support machine. So after a while, we would have to take the decision to switch it off, which was something we didn't want to have to do. It went against what we wanted for her, which was to make the choice herself when she wanted to stop fighting. When that time was to come, it would be with us at home not stuck in hospital.

The neurosurgeon said there was a chance that the skin would grow over. We would just continue with her medication and hope we got to that point.

Saturday 21st July at 12am, she had a nasty seizure which Daniel managed to bring her out of. We went to bed at 1am on the 22nd July, thankful for another day ahead in which we could spend with her.

We woke 22nd July like we had all the other 10 days; Daniel made breakfast for the kids and me, toast with marmite and a cuppa tea. I fed Ava-Marie her milk while Daniel popped to his nans to get something for Ava-Marie. While he was gone, I changed her nappy and noticed she had nappy rash which obviously bothered her as she started crying in her way in which we had come to know was her crying. I tried calming her down walking around the living room while on phone to Daniel. Trying to breathe air into her lungs, I just knew deep down this was her giving up.

I've always heard people say you can see the colour drain from someones face when they die and its true. I literally saw the colour drain from Ava-Marie's face and I just knew than, that she had given up and couldnt fight anymore.

She had passed away at 9.15 that morning after an amazing 11 days with her.

At that point, the world stopped turning and everything seemed to be so quiet.

I heard our hearts break.

Now without her, our hearts will never be whole again.



Last updated January 4, 2021