James’ story

A mum whose baby son died five days before his first birthday says she cannot imagine that period of time without East Anglia’s Children’s Hospices (EACH).

James Thorndyke had Severe Combined Immunodeficiency (SCID) and received care at EACH’s former Quidenham hospice. He died in February 2017.

His mum, Susie, has gone on to become a prolific fundraiser for the charity, including organising two balls in 2018 and 2020, and donated more than £41,000.

She says she will always be grateful for the care and support her family received – even though she was reluctant and reticent at the time.

“I think about that period of time every single day and will always be thankful,” she said.

“The nurses were lovely. They were there for us and made sure we had everything we needed. Nothing was too much trouble. James died at home and no words can describe the pain of watching your baby die in your arms, knowing you’re never going to hold or see him again.

“However, the alternative scenario – him passing away in a hospital, rather than with me at home – is unthinkable. After that he was transferred to Quidenham, where he was able to stay until his funeral three weeks later.

“At the time, I hated it. I used to go into his room after he’d passed and every time I used to hope and pray he was alive again. I found it so difficult and struggled with the memory-making, too.

“We made hand and foot casts and, at the time, I couldn’t accept what was happening and why we were doing it. What I’d give now to be able to do it all over again.

“Thankfully, the care team knew that in the long run I’d benefit and they were so right. Those hand and foot casts are among our most treasured and precious possessions.”

James was a healthy baby and born on 23rd February, 2016. When just eight weeks old, he developed a cough after having his immunisations and was initially treated for pneumonia.

Over the following week, James became worse and was readmitted to hospital. He became more and more poorly, having seizures and requiring oxygen support.

He was eventually moved to Cambridge’s Addenbrooke’s Hospital and then, following a diagnosis of Severe Combined Immunodeficiency (SCID), transferred to Great Ormand Street Hospital, in London.

SCID is the name given to a group of rare disorders which cause severe abnormalities of the immune system. It happens when white blood cells, responsible for fighting infection, are missing or not working properly, resulting in serious and often life-threatening infections.

James was on a ventilator for three weeks and doctors were concerned he would not survive as his body was being destroyed by infection. However, he defied the odds and proved a fighter, eventually coming off his ventilator and being able to breathe by himself.

His family were told a bone marrow transplant was the only long-term cure. However, James was too poorly to have the chemotherapy that ran alongside the operation and there was not enough time to wait for a matching donor.

Instead, James’s dad donated his T-Cells on 4th July, 2016. These were infused into James, in the hope they would engraft and create part of an immune system over the following six months.

When James gained strength and weight, his family were able to bring him home. He still had no immune system but, despite numerous hospital admissions, he continued to fight. He grew his hair back and gained weight.

However, he became poorly again and started having uncontrollable spasm seizures, which were constant throughout the day and night.

After another admission to Great Ormand Street in January 2017, James’ family were told the bone marrow transplant had been unsuccessful. Once again, his body was being attacked by a virus called CMV.

It had caused so much damage he was now blind, with scarring to his brain meaning he would be severely disabled. There was no way of controlling the spasms, either.

After many exhausting and heart-breaking discussions, James was able to return home to be cared for palliatively, with the support of staff at Quidenham. It gave his family the chance to enjoy their time left together.

James died three weeks later, in Susie’s arms.

After his funeral, she received counselling from EACH and says it made “such a difference”.

“Our counsellor has always been entirely supportive and I know I can always be open and honest with her, without any fear of being judged,” she said.

“It makes such a difference and I can honestly say I wouldn’t be here now without that support. I wouldn’t have coped.”

There are two bricks at The Nook bearing James’ name.

“Obviously we don’t have that emotional connection, but that’s not to say I don’t think it’s an amazing place,” added Susie, who lives with husband Justin, their 11-year-old twins, Oliver and Ethan, and five-year-old daughter, Katie, in Forncett St Mary.

“We went there not long after it opened and it really is an incredible facility.”

Published in November 2023

Families’ stories and experiences are unique to them and we have been kindly granted permission to share this family’s story. If you have been affected by what you’ve read or have a question and would like to talk to someone, please contact your local children’s hospice service or Together for Short Lives, the UK charity that supports families caring for seriously ill children (tel: 0808 8088 100).

 

Would you like us to write and share your own family story?

We give all those receiving support from EACH the opportunity to share their family story. All family members are welcome to get involved if they’d like to and we will never share your story until you are completely happy with it. If you have any questions or are interested in finding out more, please contact Matt Plummer, EACH Media and PR Manager at matt.plummer@each.org.uk.

No words can describe the pain of watching your baby die in your arms.

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