Couple 'were in total shock' after baby girl was put on end-of-life care
Mums Ash and Shell were told their daughter "was too ill to operate"
Emmy-Grace James was born in May 2022 with a life-threatening heart condition(Image: Michelle Roberts / Ashlea James)
The mums of a baby girl put on end-of-life care as soon as she was born want people to know having a hospice worker at their daughter's birth was not the "death sentence" they thought it was. "When you're first pregnant, you don't think anything will go wrong," said Ashlea James, but when she and her partner Michelle Roberts' daughter Emmy-Grace James was born they learned very differently.
At their 20 week scan, hospital staff told the couple their unborn baby had a heart condition. At that moment, their whole world "fell apart."
Emmy was born in May 2022 with complex health needs. Her first diagnosis, hyperplastic left heart syndrome, was life-threatening. And, there were lots of others to come.
Hyperplastic left heart syndrome is a severe heart defect which means the left side of the heart is underdeveloped, making it unable to effectively pump blood to the body. Their tiny baby was immediately put on end-of-life care, reports the ECHO.
Mum Ashlea, 34, known as Ash and from Ellesmere Port, said: "We felt that if Emmy was ready to fight, we'd fight alongside her. At four weeks old, we had a meeting with doctors when they told us her condition was worse than they had thought, and they felt she was too ill to operate. We were in total shock."
Despite staff saying Emmy only had a one to two percent of survival, the family spent the next six months living in Alder Hey as their "little madam" fought against the odds. After six months, Emmy was well enough to go home. But, the family were in and out of hospital and spent Christmas Day in the Countess of Chester Hospital when she developed sepsis.
Emmy in hospital(Image: Michelle Roberts / Ashlea James)
In January 2023, Emmy went into hospital for surgery, but things went downhill and her health was "up-and-down." Sadly Emmy died aged just eight months when she developed pneumonia. Ash said: "A little body can only take so much. We were in shock. Once Emmy died, it felt like she was taken away from us when we just wanted to be close to her."
The family had already been introduced to children's hospice Claire House following the 20 weeks scan, which turned out to be a life-line for them. Ash said: "The nurses tried to introduce Clare House to us and we said, 'no'. We thought it was a death sentence. Eventually we changed our minds, and we're glad we did. They gave us the support we didn't know we needed."
Before Emmy was born Claire House helped the mums-to-be with a birth plan. They had a C-section and Lucy from Claire House was there at the birth. Speaking about the birth, Ash said: "When I first saw her [Lucy], I gave her a dirty look and said 'who is she?' but I soon realised she was there for us and cared about our feelings. We felt seen and heard. She took photos and made videos that we wouldn't have thought of doing and are now really precious."
The hospice were there for the family throughout Emmy's life. When their daughter was diagnosed Michelle, known as Shell, 34, and Ash were in "total shock". They said the meetings with doctors didn't make sense to them. Ash said: "Luckily, Paula and Lucy were there to listen and arrange a follow up meeting when things could be explained again.
"Having someone compassionate to talk to was vital, and Claire House made that possible. We felt more hopeful when a nurse said she could need a tracheostomy to help her breathe for the rest of her life. That made us think there was something that could be done."
She added: "After Emmy's funeral, we thought the support would be over, but that hasn't been true. We were very anxious when we got pregnant again with Roux. Claire House was there throughout the pregnancy to support and reassure us. When you've been through what we have, your anxiety hits the roof and all you can do is think about the things that can go wrong.
"Emmy died in March 2023 and Roux was born the following March. He knows who Emmy is - we don't want her to be forgotten as she is still a part of our lives. Last year, we had a big party with all the family to celebrate her birthday."
Ash added: "To families facing this, please don't dismiss help or think a hospice means a death sentence, it doesn't. Unfortunately, we lost our baby, but we know she was honoured in life and the support we had from Claire House helped us to do this."