Woman who spent 16 days with her dead four-week-old baby taking her for walks and ‘family time’ after hospice provided refrigerated cot said it helped her feel like a 'real mother' 

  • Charlotte Szakacs, 21, from York gave birth to first child in December 
  • Evlyn was born with rare chromosomal abnormality and died at four weeks
  • Stayed in refrigerated 'cuddle cot' at hospice so parents could take her for walks
  • Parents then took her home for four days before funeral  

A mum who spent 16 days with her dead baby girl w as able to her take her daughter's body home and even for walks in a pram, thanks to a hospice's refrigerated 'cuddle cot'

Charlotte Szakacs' daughter Evlyn died at four weeks after being born with a rare chromosomal abnormality, and the 21-year-old and her husband Attila stayed at a hospice for 12 days with their daughter so they could bond as a family.

They were allowed to take her out for walks in the pram – before the first-time parents from York took Evlyn home for four days before her funeral on January 26.

Charlotte said: 'So many people have never heard of parents being able to spend that time with their babies. Other mums reached out to me saying they think it would have helped, so I really want to raise awareness. 

Charlotte Szakacs, 21, and her husband Attila Szakacs, 28,were able to spend 16 days with their daughter Evyln who died at four weeks thanks to Martin House Hospice in Wetherby, Yorks

'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.

Paint technician Charlotte and her husband Attila, an engineer, were given the devastating news their baby girl Evlyn had a debilitating chromosome abnormality after a 20-week scan in September 2016. 

The doting parents with their daughter Evyln shortly after she was born weighing 5lbs 5oz

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.

And despite battling against the odds for four weeks, the tot passed away in her parents' arms on January 10 at Martin House Hospice in Wetherby, Yorks.

'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,' Charlotte recalled. 

The couple were able to spend four days at home with their daughter before her funeral at the end of January 

'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. 

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

'She passed away just a couple of minutes after they took out her breathing tube. She was so weak she didn't take a single breath.

'I was holding her in my arms as she went and her dad had his arms around us both.

'We stayed at the hospice for 12 days and would take Evlyn out of her cuddle cot for five to 10 minutes for cuddles or to go for walks around the garden with her.

Baby Evlyn had to be connected to a ventilator as soon as she was born and her parents were told she would never be able to breathe on her own 

'And then we were allowed to take Evlyn and her cuddle cot home for the last four days. Her last night she slept in her actual cot we had got for her in our room.'

Charlotte and Attila, who married in 2015, had been trying for a baby for more than a year when they found out they were expecting the day before Charlotte's 21st birthday on April 29.

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 having skin to skin contact with her daughter for the first time. She admits that she didn't feel like a mother at first as she wasn't able to pick up her baby by herself 

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.

The devastated parents were told their daughter would have serious disabilities if she had survived 

Evlyn's narrowed airways meant she could not breathe on her own and so could not have the heart surgery she needed to survive.

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.

UNBALANCED CHROMOSOME TRANSLOCATION 

• A translocation is a rearrangement of chromosomes. Sometimes when cells divide in the formation of an egg, sperm or in the early development of a baby one or more parts of the chromosomes can break off and then rejoin but in a new location, sometimes 'swapping places' with another chromosome

• In a balanced translocation, the chromosome material is rearranged but none is lost or gained so it does not usually affect the health of the person who carries it.

• But if a parent carries a balanced translocation, it is possible for their child to inherit a rearrangement of the chromosomes in which there is an extra piece of one chromosome and/or a missing piece of another chromosome.

• Having too little or too much chromosome material can cause health problems and disability.

• An unbalanced translocation can cause serious problems in the development of the baby who carries it. The seriousness of the problems a baby has will depend on the specific chromosome translocation involved.

• Although about 1 in 500 people has a form of translocation, it is still not really understood why they happen.  

Charlotte said: 'When we got the news after the 20 week scan, Attila and I completely broke down. 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.

'The last thing you want as a parent is for your child to be sick and even after we were told she would probably never breathe on her own, we still clung onto this tiny bit of hope that she would.

'Not being able to hold her for so long was really difficult and even when we could hold her, the nurses had to pick her up and place her on us so you don't really feel like you're being a mum.

'I've never really felt like a mum. 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.

'The funeral was really difficult because then reality really started to kick in. Even though we're in so much pain now, it is a relief to know that Evlyn is in a better place.

'I would love to have her here, I would give so much to have that, but we have no idea what her life would have been like. At least now she isn't suffering.'

Dr Clea Harmer, chief executive at stillbirth and neonatal death charity Sands, said: 'We were very sorry to hear about the death of baby Evlyn and send our condolences to her parents.

'A cold cot allowed Evlyn's parents to spend extra time with their daughter after she had died, and some parents tell us that spending time with their babies at home or in hospital can help them with the grieving process.

'I would urge anyone who has been affected by the death of a baby to contact us.'

Baby Evyln battled for four weeks before she passed away in her parents' arms

A spokeswoman for Martin House hospice 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.'

 

 

 

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