Leona-Grace has reached her first birthday (Image: Craig Connor/ChronicleLive)

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A baby who was not expected to survive more than “a matter of minutes” has defied the odds to celebrate her first birthday with her family.

Samantha Perryman was told her daughter Leona-Grace had an incredibly rare form of spina bifida, while she was still in the womb.

Her spine and spinal cord didn't develop properly, causing a gap, called rachischisis.

It left the mum-of-three and partner Stephen Graham, 52, with the agonising decision of whether or not to continue with the pregnancy, Chronicle Live reports.

Samantha, 29, researched the condition and found there was only one survivor of the lethal condition – a young boy who lives in Asia.

Despite this, the couple from Craghead, near Stanley in County Durham, chose to fight for their baby and give her the best possible chance of survival.

Leona wasn't expected to survive after being born
(Image: Craig Connor/ChronicleLive)

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One year on and Leona-Grace has celebrated her first birthday at home – a moment no-one thought would be possible.

Now Samantha has opened up on the joy of spending time she never expected to have with her daughter, while living with the heartbreaking knowledge that she could lose her at any moment.

After she was born Leona-Grace was also diagnosed with patent ductus arteriosus (PDA) – a medical condition where the blood vessel that connects the pulmonary artery to the aorta remains open after birth.

It made breathing harder for Leona-Grace and she continues to be dependent on oxygen.

She was also born with scoliosis – where the spine twists and curves to the side – and has four ribs missing on the right side and two fused together on the left.

Samantha said this means Leona-Grace’s lungs could haemorrhage and come through her rib at any time, leading her to lose oxygen and die.

“It’s a constant worry,” Samantha said.

Leona-Grace with her mum
(Image: Craig Connor/ChronicleLive)

“It could happen really quickly and there’s nothing we can do about it.

“Hopefully it doesn’t come to that. We’re a year down the line and she’s still okay.”

It was at the 20-week gender scan when the couple from County Durham discovered there were complications with Leona-Grace.

The couple, who also are parents to Ella-Louise, six, Rosie-Leigh, five, were transferred to the University Hospital of North Durham, where it was confirmed she had spina bifida.

Doctors carried out a further scan at the Royal Victoria Infirmary in Newcastle just weeks later and told them the heartbreaking news that their daughter may only live for a matter of minutes, if she survived being born.

Leona-Grace was born by C-section and placed in special care leaving her family to wait and see if she would respond well to treatment.

It was on December 20, just over a month after Leona Grace was born, when Samantha and Stephen were given the news that they could take their baby girl home.

Samantha said: “She’s not walking or crawling, and she’s not expected to do any of those things, she doesn’t play with toys and she’s only managed to roll over once or twice because of her having a paralysed leg.

Samatha Perryman with Rosie, 5, partner Steve and Ella, 7, and baby daughter Leona-Grace
(Image: Craig Connor/ChronicleLive)

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“But she’s still fighting and you wouldn’t think anything was wrong with her, she’s so content, always smiling.

“Her birthday’s supposed to be a happy day, but it’s emotional at the same time.

“You always wonder, what if we had gone through with the termination, but now we know she's lasted a year, and hopefully many more years.

"Looking back to last year, we didn’t think we would have this.

“We definitely made the right decision, we just wish things could be better for her, and we didn’t have this constant worry.”