Est. read time – 7-8 minutes
Parents coping with the death of one son while continuing to care for his twin brother have spoken of the life-changing support they receive from East Anglia’s Children’s Hospices (EACH).
Kirstie and Aimee Messenger say the charity has become a lifeline through some of their darkest and most challenging times and are deeply grateful for the care they receive at The Nook.
Twins Cohen and Ethan were born at just 25 weeks in February 2015, after being conceived through IVF at Bourn Hall Fertility Clinic, in Cambridge. They were delivered at the city’s Rosie Hospital before being rushed to the Norfolk and Norwich University Hospital.
It was then that Kirstie and Aimee first met staff from EACH, while the twins were in neonatal intensive care.
Initially, however, they were reluctant to engage. The thought of being referred to a hospice while their premature twin sons fought for their lives was something they weren’t ready to face.
“To start with, I didn’t want to have much to do with EACH,” said Kirstie, 44, who was speaking during national Children’s Hospice Week.
“I didn’t want to hear about hospice care because that just meant the twins were going to die.
“Like most people, it’s a place I always associated with death. It was somewhere your nan and granddad went when they were dying.
“Now we realise it’s about so much more, and we see things very differently.”
Kirstie and Aimee, who live in Lowestoft, had already lost a daughter, who was stillborn at 33 weeks.
Then, when the boys were born, their paths diverged dramatically.
After the complications associated with extreme prematurity, Ethan initially made remarkable progress. He came off oxygen, crawled within a year and was walking by the age of two.
Cohen, in contrast, faced significant challenges. Diagnosed with quadriplegic cerebral palsy and chronic lung disease, he required round-the-clock care.
“He didn’t develop as he should and didn’t babble,” said Aimee, 41.
“He couldn’t make any noise and we couldn’t get him off oxygen.
“He required round-the-clock care, including suction every 20 to 30 minutes.”
In February 2018, doctors delivered devastating news.
Cohen needed non-active palliative care, and the family were told he was unlikely to survive. It could be six days, six weeks or six months. Instead, he defied expectations and lived for almost another year.
On Christmas Day 2018, the family went out for dinner together. Cohen sat smiling and laughing, but, within hours, everything changed.
“When we got him home and I took him out of his chair, I took one look at him and knew something was very wrong,” said Kirstie.
“He was unresponsive, so we phoned for help, and I knew then he wouldn’t be coming home again.
“We went from ice cream to an ambulance within the space of an hour. Our whole world changed within minutes.”
Cohen died in January 2019, leaving his family to navigate overwhelming grief while continuing to care for Ethan.
“People forget and friends don’t mention him,” said Aimee.
“None of them have lost children, and it’s like they’re scared to say his name.
“But we’ll never forget Cohen. We talk about him all the time.
“There’s a well-known saying among bereaved parents – ‘say my name’ – and it basically means don’t stop saying my child’s name.
“It makes such a massive difference to us when people refer to Cohen or, as we often called him, Coco.”
While Kirstie and Aimee – also parents to Charlotte, 23, Mikey, 21, Harrison, 19, and Austin, 13 – continue to carry their grief, they are also focused on Ethan, now 11.
In October 2017, an abscess on his bowel caused catastrophic damage, destroying the then two-year-old’s entire large bowel and most of his small bowel. He now lives with short gut syndrome and continues to face complex medical issues affecting multiple organs.
“We could see him dying in front of our eyes, and he lost half his body weight in ten days,” said Kirstie.
“Halfway through what turned out to be a 14-hour operation, the surgeon came out and said, ‘your child is going to die’.
“At one point, Ethan stopped breathing and had to be resuscitated. How he survived is beyond me, and some of the consultants said he should have died. They said he wouldn’t last the night, and yet he’s still going.”
Despite the challenges he faces, the couple say their son is happy, determined, adventurous and loves his time at The Nook.
“Ethan goes in running and laughing,” said Aimee.
“It’s home from home, and we know he’s safe when he’s there. He can take his cuddly toys and his Switch.
“They don’t focus on his health. To them, he’s just a child and we’re no different to any other family.
“They ask him what he wants to do, and he even gets to choose his own dinner. It’s like a little holiday for him.”
Whether he’s enjoying music therapy, art therapy, self-care sessions or overnight stays, The Nook has become a special place for Ethan.
“When we had our family stay, he loved every second because he felt like a big boy having a sleepover,” added Kirstie.
“He asks, ‘When can I stay again? When can I go for a sleepover?’
“EACH feels like extended family and they always seem to know when to phone, if I’m having a bad day and need support. It’s like they’ve got a sixth sense.”
The hospice has also supported Ethan’s siblings, and they have attended events like summer fun days and Winter Wonderlands, at Christmas. The family are also regulars at The Nook’s Memory Days.
For Kirstie, who struggles with anxiety around hospitals, the hospice offers something she finds nowhere else.
“It’s nice to know we’re not the only ones in this situation,” she said.
“Everyone walks in the same shoes, and it feels like a weight has been lifted from your shoulders because every parent understands.
“If you need to sort any medication, you can just do it there and then. You haven’t got to find a disabled toilet.
“When you walk through the doors, you forget the stress. It’s like being in a different world to the one we leave behind. Like there’s a different time zone.
“Everything feels normal and Ethan’s accepted.
“We have relationships with the care team and it’s so much more personal than the medical, clinical feel of a hospital. It’s a place where we go to have fun.”
Most importantly, EACH provides reassurance for a couple living with uncertainty every day.
“As the parents of a child with complex needs, it’s the fear of waking up every morning, going in to see your child and wondering if they’re still with you – or whether this is going to be the day,” she said.
“It’s horrible, living with constant worry of what happens if something goes wrong and we’re not there.
“We wouldn’t have got through the last seven years without EACH, and having that support makes such a difference.
“Even if you’re just having a rubbish day and need to pick up the phone and rant, they get it and understand.
“We already know Ethan will spend his final days at The Nook.
“We also know they will support us, both as a charity and as a family, because that’s exactly what they are to us – family.”
Kirstie struggles to imagine how they would have coped without the hospice by their side.
“You’re not meant to lose your children,” she said.
“When I was younger and thought about having a family, I only ever thought of them growing up healthily and everything being hunky-dory. I didn’t for one moment think this would happen.
“Sometimes you do need help and for someone else to step in because you’re feeling way above your head. That’s where the hospice comes in.
“EACH makes a huge difference to parents like us and families like ours.
“They help us cope and deal with a life that isn’t normal. I don’t even know if the staff realise how important and incredible they are.”
The couple describe their son as ‘absolutely amazing in every way, shape and form’.
“He broke the mould the day he was born, and he’s fought from day one, showing a steely determination when others didn’t expect him to survive,” said Kirstie.
“He’s stubborn, fiery, inquisitive and adventurous, and if he didn’t have the personality he’s got he wouldn’t be here now.
“If he wants to do something, he’ll do his best to do it.
“The thing I love most is that when a child gets to 11, they’ve often lost their childish innocence. They’re starting to grow up.
“Ethan isn’t like that. He’s still a young, giggling boy with a great sense of imagination who believes in the magic of childhood. He loves to play and explore the world around him.”
Aimee agrees.
“Deep down he knows what he can and can’t do, but he doesn’t listen and just does it anyway,” she said.
“That’s why he always needs someone there with him, just to rein him in a little when he goes a little bit crazy!
“He’ll try anything and we’re very proud of him. He’s a character, and we wouldn’t have him any other way.”
Reflecting on the support they have received over the years, Kirstie says her perception of hospices has changed completely.
“It’s not about death, as some people think,” she said.
“The Nook is a fun place that makes people happy, and you certainly don’t walk in thinking about dying. Far from it.
“In reality, the team feel like extended family and it’s a special place of love, care, reassurance and support.”
Led across the UK by Together for Short Lives, the charity for children’s palliative care, Children’s Hospice Week is the only week of the year dedicated to raising awareness of children’s hospice services. It started on Monday, 15th June and runs until Sunday, 21st June.
