BIRTHDAY THEY SAID SHE MIGHT NOT SEE
DOCTORS THOUGHT GIRL MIGHT ONLY LIVE FOR MINUTES
A BABY who was not expected to sur-rvive more than “a matter of minutes” after being born has celebrated her first birthday.
When she was 24 weeks pregnant, Samantha Perryman’s was diagnosed with an incredibly rare form of spina bifida – when a baby’s spine and spinal cord don’t develop properly in the womb, 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.
Samantha, 29, researched the condition and found there is only one survivor of the lethal condition – a young boy who lives in Asia.
Despite this, the couple from Craghead, near Stanley, chose to fight for their baby and give her the best possible chance of survival.
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 birth, 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 LeonaGrace who continues to be 24/7 oxygen dependent.
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 LeonaGrace’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. “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 County Durham couple 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 in the first place.
After being born via c-section Leona-grace was placed in special care and the family was forced to wait and see if their daughter 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.
Leona-grace’s first operation was spinal surgery while the second was to have shunts placed in her head to relieve the build-up of fluid on the brain after she developed hydrocephalus.
She has now been diagnosed with chiari malformation, where the lower part of the brain pushes down into the spinal canal, and could potentially have surgery on her hip and spine.
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.
“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.”
She’s still fighting and you wouldn’t think anything was wrong with her, she’s so content, always smiling SAMANTHA PERRYMAN