The parents of a baby who died just six weeks after being born have described the turmoil they faced ahead of their devastating loss.

James Harrowven, 32, of Norwich, and his wife Michelle, were left heartbroken last year after being told their newborn daughter Chloe had a rare and life-limiting genetic condition.

The tot was diagnosed with Zellweger’s Syndrome shortly after being born on August 2 and needed around-the-clock ventilation.

She began having seizures and after a week in neonatal intensive care, was diagnosed with the rare syndrome.

Mr Harrowven said: “What happened in the next six weeks changed our lives forever.

“We quickly went from proud, excited new parents to new parents with a very ill, special needs child to then grieving the loss of our second child.

“It was like nothing we could ever have imagined.”

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.

It was the first time in a decade the condition had been diagnosed at the Norfolk and Norwich University Hospital.

Mr and Mrs Harrowven were initially told their daughter could live for up to a year, although the majority do not make it past six months.

Eastern Daily Press: The Nook, East Anglia’s Children’s Hospices centre in Framingham EarlThe Nook, East Anglia’s Children’s Hospices centre in Framingham Earl (Image: Archant)

While the couple were preparing to leave the hospital to go home, they were offered the chance to stay at The Nook - the East Anglia’s Children’s Hospices (Each) facility based in Framingham Earl, near Norwich.

“We were given the option of stepdown care at The Nook,” Mr Harrowven said.

“It was basically a way of bridging the gap between the hospital and home and felt like the right thing to do.

“Alfie, our three-year-old son, also got to meet his little sister during that time.

“The support we received was amazing.”

After just a few days there, Chloe began to deteriorate.

“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.

“We couldn’t have got through those last few days without having that support around us. It was beyond anything we could ever have wished for.”

Chloe spent the final week of her life at The Nook and died on September 13, 2021.

Her dad added: “Although Chloe didn’t make it home, we’re so happy she got to spend her final days with us both by her side.

“We feel so fortunate that the final week of Chloe’s life was spent with the incredible team at Each.

“It took the weight off our shoulders and the care team was 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.”

Mr Harrowven shared his heartfelt words and opened up about Chloe’s death during last month’s Children’s Hospice Week – a national week of awareness that takes place every year in June.

Each cares for children and young people with life-threatening conditions across Cambridgeshire, Essex, Norfolk and Suffolk, and offers support to the families including where their child dies.

Eastern Daily Press: The Duchess of Cambridge is a patron of Each and visited The Nook hospice in Norfolk in 2019The Duchess of Cambridge is a patron of Each and visited The Nook hospice in Norfolk in 2019 (Image: Archant)

The charity relies on voluntary donations for the majority of its income and its royal patron is Her Royal Highness, The Duchess of Cambridge.