'I will never stop grieving my baby boy'

A mother says she will never stop grieving her baby boy, who died at just six weeks old.

Zoe Makey and her husband Owen, from Fontwell, West Sussex, were excited to start a family, but an 11-week scan at Worthing Hospital revealed something was wrong.

Loui was born prematurely at 33 weeks but died six weeks later in November 2023.

As the UK marks Grief Awareness Week, Zoe says the support she received from Chestnut Tree House children's hospice helped her through the darkest times.

Further tests during pregnancy showed the nerve fibres connecting the two hemispheres of the baby's brain were completely absent.

After his birth, baby Loui was diagnosed with an extremely rare degenerative genetic disorder called ATG7 ataxia.

Despite briefly opening his eyes and kicking his legs, his condition deteriorated.

"He enjoyed it when I rubbed cream into his hands and feet and loved having his head stroked," Zoe, 25, said.

"It was a rubbish situation but we had the best time being his parents, he gave us so much joy."

When medication could no longer control Loui's seizures, the family were offered a place at children's hospice Chestnut Tree House.

It was too risky to move him, so they stayed in a private hospital room.

After Loui's death, around Christmas, Zoe began visiting Chestnut Tree House for support.

"Having that support over Christmas and going into the New Year was so helpful because it was very hard coming back to an empty house," she said.

Zoe later got a new job for a fresh start but felt her colleagues were "walking on eggshells" around her.

"Some of them had young children or grandchildren and I felt like when I walked into the room and they were talking about their kids, they stopped," she said.

"I hated that, so I spoke to my line manager and my Chestnut counsellor and decided to call a meeting. I wrote three pages about Loui – from the first scan until his last day – and read it out in the staff room.

"I wanted people to know that, yes, losing a baby is awful, but I am still me. I still like to laugh. I still like to stuff my face with chocolate. I wanted people to know that they can talk to me about their children."

Zoe and Owen often go camping in woodland, and whenever they do, they look for an oak tree.

Zoe said: "They have come to symbolise our baby son...when Loui was in the hospital, a nurse shared the saying, 'from small acorns grow mighty oaks' and that's always stuck with us.

"Loui was a little acorn here on Earth, but he's a tall oak tree in Heaven."

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