Pregnancy A mother who spent 16 days with her dead baby girl has shared heartbreaking photos from the experience - which saw her take her daughter's body home and even for walks in a pram. When Evlyn was born on December 13 at Leeds General Infirmary weighing 5lbs 5oz she had an underdeveloped brain which was completely smooth, narrow airways in her nose and lungs and a narrow aorta.
Charlotte, from York, said: When we got the news after the 20 week scan, Attila and I completely broke down. Being able to do so many of the things you imagine like taking her out in her pram, it really helped emotionally. And it wasn't just for us but for Evlyn so she got to come home. We got to hold her and cuddle her properly for the first time for an hour before they turned off the ventilator. She was so weak she didn't take a single breath.
Evlyn had to be connected to a ventilator as soon as she was born Credit: Mercury Press and Media Ltd "I was holding her in my arms as she went and her dad had his arms around us both. Her last night she slept in her actual cot we had got for her in our room.
The first-time mum had a completely normal pregnancy until a 20 week scan revealed Evlyn's brain was not developing properly and she had a hypoplastic aortic arch.
Charlotte and Attila had been trying for a baby for more than a year Credit: Mercury Press and Media Ltd Doctors investigated and amniotic fluid tests which revealed Evlyn had unbalanced chromosome translocation - a genetic condition that can go unnoticed in parents but in the baby's development causes two chromosome to switch places, resulting in missing and extra genes.
Charlotte had to have scans every two weeks throughout her pregnancy and at 37 weeks, Evlyn was delivered by caesarean as the blood flow to her mum's placenta had started to fail.
The newborn was rushed to a ventilator as soon as she was born and mum Charlotte did not get to see her for seven hours - and could not hold her for three days.
Evlyn's narrowed airways meant she could not breathe on her own and so could not have the heart surgery she needed to survive.
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But even if the little girl had pulled through, doctors told her parents she would have faced a life with hearing, sight and speech problems and severe mental and physical disabilities. While Charlotte would give anything to have her daughter with her, the mum said she knows that Evlyn is in a better place.
After sharing her experience of having those 16 days with Evlyn, Charlotte realised a lot of people were unaware that the option was there for grieving parents and she now wants to raise awareness.
I think we broke down more then than when we lost her because at that point we just had no idea what it all meant. I feel like when I was pregnant and I had all the stuff ready for Evlyn but now I'm just not pregnant. It's hard to explain, it doesn't feel real - I'm just empty. Even though we're in so much pain now, it is a relief to know that Evlyn is in a better place.
At least now she isn't suffering. We work hard to balance their hopes, expectations and the need they feel to be parents with the specialist palliative care offered by our team.
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