LELAND, NC (WECT) - Imagine as a parent learning that your unborn child has only a one percent chance of being born alive?
That is the grim news one Leland family was faced with last year.
Nick and Renee Arbia of Leland headed to their first ultrasound at 18 weeks only to learn their unborn baby had a long list of problems including a large cyst on the back of her neck, fluid around the heart, lung issues, potential hearing issues and short arms and legs.
"The doctors were telling me, well you are going to have to prepare for her birth," Renee Arbia said.
The Arbias were whisked to a second ultrasound where doctors told them their unborn baby had Turner's Syndrome, a rare disorder where more than 99 percent of babies never result in a live birth.
"First, she came in and told me that my baby had cystic hygroma which is a fluid filled sac right behind her head. Then she told me the baby had some issues with her heart and her kidneys," Renee explained.
The Arbias were faced with a huge decision: do they terminate the birth given the odds stacked against them or do they wait it out and hope for a miracle?
They were whisked to a specialist. Doctors then confirmed through amniocentesis that their unborn baby girl had Turner's Syndrome, something they had never heard of.
"Turner Syndrome is a chromosomal abnormality, it is a condition where a girl is missing one of the chromosomes or part of X chromosome," explained Dr. Kateryna Kotyarevska, an endocrinologist at the Nunelee Pediatric Specialty Clinic at NHRMC. She is also one of Imogen's doctors.
Kotyarevska said this rare condition only affects girls, girls that rarely ever make it into the world.
"A lot of babies have this condition, but they never leave the term, more babies died before they are born," Kotyarevska said.
Their pregnancy was full of ups and downs and huge problems with the baby in the womb. The Arbias secluded themselves. They didn't announce the pregnancy. They didn't set up a nursery or even accept gifts.
"It was like a nightmare, we just kept thinking something was wrong with the equipment, or they saw a different baby," Renee said.
The family stayed on an emotional roller coaster for six months, but Imogen continued to show her presence from inside the womb.
"She was a big kicker, which was wonderful because of the fact she moved every two hours, " Renee explained.