Middlesbrough mum speaks of baby losses because of a rare condition

It's part of baby loss awareness week

Author: Karen LiuPublished 10th Oct 2024

A mum from Middlesbrough has been telling us about the loss of her two baby boys because of a rare condition.

Jessica Stephens did not realise she was a carrier of OTC deficiency which only affects boys. There is a 50/50 chance of her passing it on.

She lost her first son called August in 2020 soon after he was born and made a memory box in hospital.

Two years later, she lost her second son, Blake, during pregnancy.

Jessica said: "Our life was just turned upside down in a matter of days really. It feels like the worst thing ever having to leave that hospital and leave him behind and then start planning a funeral that you never thought you'd have to plan.

"It was just like an absolute awful time of our life. The doctors finally found a diagnosis but it was too little, too late. I'm like a carrier in a way so I didn't know that I could possibly pass this onto him.

"He went into the neonatal on the Tuesday, we found out on the Wednesday that that's what it was and come the Wednesday tea time, we were taking him off life support because he couldn't keep going. It was so fast.

"Honestly the memory box is the most prized possessions I've got of him because it's all I've got left are those things. Instead of taking your baby home you're taking this box of memories.

"We decided to try again but test during pregnancy. I fell pregnant with Blake, he was a boy and we then tested to see if the condition was there and it was, so then we had to make that heartbreaking decision whether we end the pregnancy now or let him die at birth and to me that's not a choice.

"I feel like people look at my second son as less of a person than my first son because he died during pregnancy rather than being born but in my head, they're exactly the same because it was the same condition that took them."

Jessica is part of the Still Parents Teesside group, which was set up for those affected by the death of a baby.

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