A dad whose baby daughter died after just six weeks says he and his wife will always be grateful for the “incredible” support they received from East Anglia’s Children’s Hospices (EACH).
James Harrowven, from Norwich, was speaking during Children’s Hospice Week – a national week of awareness that runs from 20th-26th June 2022.
Little Chloe had an extremely rare, genetic condition called Zellweger’s Syndrome and spent the final week of her life at The Nook, in Framingham Earl. She died on 13th September 2021. James, 32, says he and wife Michelle will forever be grateful for the support they received from EACH.
“Chloe was born on 2nd August and what happened in the next six weeks changed our lives forever,” he said. “She needed 100% ventilation and started having seizures. After a week on the neonatal intensive care ward, she was diagnosed with a rare, terminal genetic condition called Zellweger’s Syndrome. “The last diagnosed case in the hospital was over ten years ago.
“We quickly went from proud, excited new parents to new parents with a terminally ill, special needs child to then grieving the loss of our second child. “It was like nothing we could ever have imagined but we feel so fortunate that the final week of Chloe’s life was spent with the incredible team at EACH.
“I admit I didn’t know much about the charity when we offered the chance to go to The Nook. However, I can safely say the support we received was amazing.”
Zellweger’s Syndrome is a peroxisomal disorder involving the creation and function of peroxisomes, which are needed for the body to function properly. Peroxisomes are part of a cell impacting every system in the body, including breaking down fatty acids and producing lipids that are vital to the nervous system, digestion and the brain.
James and Michelle were initially told their daughter could live for a year, although the majority do not make it past six months.
“We didn’t know what the future held and were getting ready to go home from hospital,” said James. “Then we were given the option of stepdown care, at The Nook. It was basically a way of bridging the gap between the hospital and home and felt like the right thing to do.
“Alfie (who has just turned three) also got to meet his little sister during that time. After a few days there we were preparing to go home when Chloe deteriorated. Things went rapidly downhill but had that happened at home it would have been so much worse. We were in the right place, in terms of help and support, and, in that respect, it was the best decision we made.”
James says the support he and wife received took much of the pressure off their shoulders. “We couldn’t have got through those last few days without having that support around us,” he added. “It was beyond anything we could ever have wished for. Although Chloe didn’t make it home, we’re so happy she got to spend her final days with us both by her side.
“It took the weight off our shoulders and the care team were absolutely fantastic. They couldn’t do enough for us. They gave us time and space, leaving us to come to terms with everything that was happening. Equally, we knew they were right there if we needed them so we never felt alone.
“They cooked us meals and looked after us, which meant the world and made such a difference. It was incredible and we want to show our thanks.”