A miracle baby celebrates its first birthday and defies the doctors after her mother was told she was unlikely to survive.
Samantha Perryman was 24 weeks pregnant when her unborn baby was diagnosed with an incredibly rare form of spina bifida.
Known as rachischisis, it means that the baby’s spine and spinal cord are not developing properly in the womb, creating a gap.
Samantha (29) and partner Stephen Graham (52) suddenly faced the decision of all expectant parents to decide whether to terminate the pregnancy.
When Samantha researched the condition, she only found one survivor, a boy who lives in Asia.
Even so, the couple from Craghead, near Stanley, County Durham, decided against the adversity of the doctors to continue the pregnancy.
It’s now a year later and baby Leona-Grace is celebrating her first birthday, surrounded by her family who are full of joy over the miracle baby’s struggle for survival.
After birth, Leona-Grace was also diagnosed with a patent ductus arteriosus (PDA) – a disease in which the blood vessel connecting the pulmonary artery to the aorta remains open after birth.
This made breathing difficult for Leona-Grace, who is still dependent on oxygen around the clock.
She was also born with scoliosis, which is where the spine turns and curves to one side. Four ribs are missing on the right and two fused together on the left.
Samantha said this means that Leona-Grace’s lungs could bleed at any time and get through her rib, causing her to lose oxygen and die.
“It’s a constant worry,” said Samantha.
“It could happen very quickly and there is nothing we can do about it.
“Hopefully it doesn’t come to that. We’re a year later and she’s still okay.”
During the 20-week gender scan, the couple discovered that Leona-Grace had serious complications
Samantha, mother of Ella-Louise, six, and Rosie-Leigh, five, was rushed to North Durham University Hospital, where the developing baby was confirmed to have spina bifida.
Another scan at Newcastle’s Royal Victoria Infirmary a few weeks later revealed that if she survived the birth, her daughter may only live a few minutes.
Leona-Grace was eventually born by caesarean section and had special care from birth. Her family was waiting to see if she would respond to treatment.
On December 20, a little over a month after Leona Grace was born, Samantha and Stephen were allowed to bring their baby girl home.
The first surgery Baby Leona-Grace had was spinal surgery, while the second was to put shunts in her head to relieve the buildup of fluid in the brain after she developed hydrocephalus.
She has now been diagnosed with a Chiari malformation, in which the lower part of the brain invades the spinal canal and could possibly require surgery on her hip and spine.
Samantha said, “She doesn’t walk or crawl and she isn’t expected to do any of these things, she doesn’t play with toys, and she only managed to turn around once or twice because she has a paralyzed leg.
“But she’s still fighting and you wouldn’t think anything was wrong with her, she’s so pleased and always smiling.
“You want your birthday to be a happy day, but at the same time it’s emotional.
“They always wonder what if we had gone through the resignation, but now we know it was a year and hopefully many more years.
“Looking back on last year, we didn’t think we’d have that.
“We definitely made the right decision, we just wish things could get better for them and we didn’t have that constant worry.”