'Our little miracle wasn't ready to say goodbye'

Karen and Johnathan Ritchie are sharing their story as part of the charity’s 2024 Christmas Appeal ‘Thea’s Gift’ which aims to help families facing the unimaginable loss of their child create precious memories to hold onto.

Thea’s Gift tells how Thea defied the odds to stay with her mum, dad and big brother Rupert for a little while longer after receiving a devastating diagnosis. 

“It was the worst news we could ever receive in our lives,” Karen and Johnathan said. “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.”

When Karen and Johnathan found out they were expecting their second child, they dreamed of all the adventures they’d have and the 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 24 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.”

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

Thea had become sleepy and lethargic and within a matter of hours was being rushed to Birmingham Children’s Hospital: “She was hooked up to every machine going. We knew it was something significant.” 

Thea was put on a ventilator while test after test was carried out over four long days, before the heartbreaking diagnosis finally came.  

Karen and Johnathan made the impossible decision to take Thea off the ventilator. She was just one week old.

“We had to do what was right for Thea,” they explained. “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.”

But Thea’s fighting spirit came through. “She was a little miracle. She wasn’t ready to leave. We were expecting no more than a couple of hours with her, but Thea was still with us the next morning.”

Karen and Johnathan made the decision to spend whatever time they had together at Acorns Children’s Hospice. There, at the charity's hospice in the Black Country, Thea received the specialist nursing care she needed, and her parents were given the confidence to make memories they wouldn’t have been able to in hospital or at home. 

At Acorns, the couple brought their family back together and filled tiny Thea’s life with all the love and memories they could. This gift of time and the 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. 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 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 loved ones 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. 

“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 Acorns staff and family. 

“It was really horrific, but we were also so prepared and relaxed, because we were at Acorns and had been so well supported throughout 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. They spent the time with us creating memories; things we wouldn't have thought of doing – handprints, footprints, fingerprints.

“Thea will always be a part of us, and we will treasure these and the memories we made forever.”

Every family deserves the chance to create unforgettable memories with their child, no matter how short their time together. 

Acorns Children’s Hospice provides specialist palliative care for babies, children and young people with life limiting and life threatening conditions, and support that allows their families to make the most of each precious moment.

In the past year, the charity has cared for more than 780 children across the West Midlands, and supported over 1,000 families, including those from Nuneaton and Warwickshire.

This vital gift of care and support is provided from Acorns three hospices, based in Birmingham, Walsall and Worcester, and in the community.

Acorns needs around £35,000 each day to provide its children’s hospice care, with two thirds of that amount coming from generous donations and fundraising by the local community.

Give the gift of Acorns care and support for seriously ill children and their families this Christmas. Visit acorns.org.uk/theas-gift.