Thea’s story

18th November 2024

When Karen and Johnathan found out they were expecting their second child, they dreamed of all the adventures they’d have and the precious memories they’d make together.

A keen planner, Karen had mapped out their lives, imagining their children as best friends, playing out in the garden, building snowmen in winter and opening presents together on Christmas Day.

She and husband Johnathan were so excited to start enjoying life as the ‘awesome foursome’ that when baby Thea was born on 24th August 2023, one of the first things Karen did was order her personalised Christmas stocking and plate for Santa.

“It was just pure excitement,” Karen said. “We kept saying we were the awesome foursome. Our family felt complete. We’d mapped out our whole life together.”

A mom, dad and young boy looking over a cot at a small baby.

“I live and breathe Christmas and because we didn’t know if Thea was a boy or girl during the pregnancy, I’d saved all these little things I wanted to get that I couldn’t until she was born. So once Thea arrived, I ordered them all – her personalised stocking, a plate to put out for Santa and the book she’d read on Christmas Eve.”

But after just four days at home, the family’s world came crashing down.

A dad holding a small baby with a feeding tube.

Karen says she’d had a ‘nagging feeling’ something wasn’t right. Thea was lethargic, sleepy and wasn’t waking for feeds. She and Johnathan had reached out to their midwife team and were reassured on daily visits.

“The pregnancy had been great. We loved being parents and couldn’t wait for our son Rupert to become a big brother,” Karen said.

Thea’s birth was quick; she arrived nine days early but was ‘perfect’.

Her sleepiness and struggles to feed were thought to be the result of her fast delivery. But on day four, Karen and Johnathan were alarmed at how floppy Thea had suddenly become and their midwife agreed.

“We went to our local hospital straight away,” Johnathan explained, “thinking we’d be there for a couple of hours and just needed to get some nutrition into her to build up her strength and energy. But as more and more doctors, nurses and consultants became involved and no improvements were being made, that was the point we thought, ‘something really isn’t right’.”

“We were blue-lighted to the Children’s Hospital the next day and she was hooked up to every machine going. I knew it was something significant,” Karen added.

Thea’s diagnosis

Thea was put on a ventilator while test after test was carried out over four long days. Nothing could have prepared Karen and Johnathan for the devastating diagnosis

“It was the worst news we could ever receive in our lives. We’d never heard of Nonketotic Hyperglycinemia (NKH). It’s a rare metabolic disorder that meant Thea couldn’t break down glycine which was causing her to have catastrophic seizures. Unbeknownst to us we were both carriers of this genetic misprint and had found each other.

“It was the hardest decision to take her off the ventilator, but we had to do what was right for Thea. She was just one week old. We sat with her in our arms, just looking at her. She was beautiful. It was the first time we’d seen her without the tubes since we’d arrived at the Children’s Hospital.”

A man and woman hold a tiny baby, looking down at her

“She was a little miracle. Her fighting spirit came through because she wasn’t ready to leave. When we took her off the ventilator, we were expecting no more than a couple of hours with her, but Thea was still with us the next morning.”

It was at this point, Karen and Johnathan were given the options to spend whatever time they had left together at home, in hospital or at Acorns Children’s Hospice.

It was then the couple made a new plan – to bring their family back together at Acorns and fill tiny Thea’s life with all the love and memories they could. This additional time and precious moments are something they will ‘treasure forever’.

“The moment we came to Acorns, a blanket was wrapped around us; first as a family of three, and then when Rupert joined us that blanket just got bigger and stronger.”

Acorns supported the whole family

“Everybody was looking after us, they couldn’t do enough. Putting us at ease and making sure Thea was cared for. They fed us and did our washing – doing those normal chores meant we were able to spend every minute, every second with Thea and that’s what we wanted.”

Thea found the strength to stay with Karen, Johnathan and big brother Rupert for 15 more days at Acorns, where they were given the gift of time together as a ‘normal family’, making memories and keepsakes, enjoying visits from family and spending sunny evenings out in the hospice garden.

When it was time to say goodbye on 15th September, Karen and Johnathan chose one of their favourite spaces. Thea was just 23 days old.

A woman holding a tiny baby sits in an Acorns sensory room, surrounded by multicoloured lights
A woman holds a tiny baby close to her and nuzzles the top of her head as they sit outside in an Acorns hospice garden

“We knew it was close. We said we wanted to be outside, because the garden meant so much to us. So, we sat in the sunshine and just held her in our arms, which was really peaceful, and Thea passed.

“We held her as long as we wanted to, just cherishing her and her beauty. We could hear Rupert’s laughter; he was happy in another part of the garden being looked after by staff and family. We had taken ourselves away to the memorial garden where we’d sit with Thea every evening when Rupert was sleeping. It just felt right.

“It was really horrific, but we were also so prepared and relaxed, because we were at Acorns and had been so well supported through Thea’s journey. What we achieved in those 15 days at Acorns was something special. Thea just wasn’t ready to go when in hospital, instead she’d decided ‘I’m going to give you so much more’.

“Acorns was everything we needed without knowing we needed it.”

Creating memories

“The first time we made that turn into Acorns our hearts were completely broken knowing we were there on an end of life pathway. But now when we return to visit it’s like we’re seeing family.

“It’s actually a positive thing for us; in that the majority of Thea’s life was here. Yes, there are sad memories but all our happy memories of Thea are here. Ultimately, Acorns puts a big blanket around you and makes you feel at home.

“They spent the time with us creating memories, things we wouldn’t have thought of doing – handprints, footprints, fingerprints. Things we will treasure forever.”

It’s these memories, keepsakes and many other priceless mementoes, Karen says, she and Johnathan hold on to.

Two white baubles handing on a Christmas tree. One says Thea Evelyn and the other has a small hand print with eyes and a nose.

“I’ve got Thea’s thumbprint on a keyring that I rub and feel all the time,” Karen smiles. “That’s something I really, really cherish.

“Acorns knew all the things that we were sad about. We were trying to live every moment with Thea but also processing that this ‘plan’ we had for a future with her wasn’t going to be.

“I remember saying, ‘She’s not going have her first Christmas’, and the nurses offered to do Christmas day for us the next day – and they would have done it. They would have done anything to make sure we were living every moment to its fullest.”

A man and woman standing around a Christmas tree. The woman is holding a little boy. The man and little boy are putting a gold star on the top of the tree.

Thea has become an important part of her family’s Christmas celebrations, with Karen, Johnathan and Rupert creating their own special traditions with Thea at their heart.

“All those personalised things I’d bought for Thea for Christmas – at first it was so hard when they came through the post and we opened them up after she had passed,” Karen shared.

“But last year, our first Christmas without Thea, we still put out her plate for Santa, we released a balloon in the garden with written messages of love, and on Christmas morning, we each had a sentimental gift from Thea in her stocking. Rupert gave them out to each of our close family members. It was really nice and it’ll become an essential part of our Christmas for years to come.

“Thea touched so many people’s lives in her short life, it would be wrong for us not to continue celebrating her for special occasions. She will always be with us.”

Christmas appeal

This Christmas we have launched an appeal to raise vital funds for children and families like Thea’s.

Acorns gives families like Thea’s some space and calm for those final days. We provide treasured memories that will last a lifetime.

But we can’t do that without you.  Your gift today will help us provide vital care at our hospices in Birmingham, Walsall, and Worcester this Christmas and throughout the year ahead.

Donate to our Christmas appeal today