Brave Charlotte Szakacs, 21, and her husband Attila, 28, were given the devastating news their baby girl Evlyn had a debilitating chromosome abnormality after a 20-week scan in September 2016.
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.
Paint technician Charlotte and engineer Attila stayed at the hospice for 12 days while Evlyn was kept in a refrigerated ‘cuddle cot’ and were allowed to take her out for family walks before the first-time parents took Evlyn home for four days before her funeral on January 26.
Charlotte, from York, said: “So many people have never heard of parents being able to spend that time with their babies and other mums reached out to me saying they think it would have helped so I really want to raise awareness.
“I know it might not be the best option for everyone but for us it was so important to be able to have that family time – and just properly cuddle our little girl.
“I think having the time with her made such a difference. Being able to do so many of the things you imagine like taking her out in her pram, it really helped emotionally.
“I was really nervous about bringing her home because I didn’t know if it would feel right but it was so nice to have her there. And it wasn’t just for us but for Evlyn so she got to come home.
“After she was born the doctors told us we should think about moving her to a hospice but I wasn’t ready and I didn’t want to believe what they were saying.
“But over the next week she got worse and worse and we knew we could either watch our little girl die in a hospital, on a ventilator, surrounded by doctors and beeping machines or let her go peacefully in a lovely hospice.
“It was the hardest decision you could ever make as parents but I knew keeping her at the hospital would just be selfish.
“Evlyn was moved to the hospice on January 10 and I have never seen her so calm. We got to hold her and cuddle her properly for the first time for an hour before they turned off the ventilator.
A spokeswoman for Martin House hospice, where Evlyn stayed, said: “At Martin House we support families in a place of their choosing, either at home, within the hospice or in hospital setting.
“Our emphasis is always on the family’s wishes. 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.
“Whatever life-limiting condition a baby may have, the involvement of children’s hospices like Martin House allows families to make informed choices about their care and make the most of the precious, and often limited, time they have with their baby.