Mother grateful after rare set of twins with spina bifida survives pregancy

First documented case of twins with birth defect
Posted at 6:00 AM, May 12, 2017
and last updated 2017-05-14 09:35:36-04

Six days after a delivering a rare set of twins, Linna Nieves finally got the chance to enjoy the moment every mother cherishes — holding a newborn.

The 35-year-old mother from Austintown fought back the tears as nurses in the neonatal intensive care unit at Akron Children's Hospital gently handed her son, Micah, to cradle in her arms.

Heading into Mother's Day weekend, it was an emotional gift that far surpassed chocolates or a dozen roses.

"This is my first time holding Micah, of the two, and it's amazing. He's so warm," Nieves said.

A bumpy road

The road to bring Micah and his identical twin, Cairo, into the world was not an easy one for Linna and her husband, Eddie, and it appears to be unchartered in medical documentation.

Nineteen weeks into her pregnancy, an ultrasound brought startling news. Images revealed both boys had openings in their spinal area and were diagnosed with spina bifidia.

A rare diagnosis 

The neural tube defect occurs in one in 1,000 births. However, Micah and Cairo may be the first known set of identical twins to be born with the condition where bones of the spinal cord don't form properly around part of a baby's spinal cord.

"It's never been reported before in identical twins where both babies have spina bifida," said Dr. Katherine Wolfe, a perinatologist, who along with Dr. Stephen Bacak, delivered the twins at 31 weeks on May 4 at Cleveland Clinic Akron General Medical Center.

After the double diagnosis, doctors had frank conversations with the couple, explaining that the brothers would face life-long physical challenges and have a 60 percent chance of dealing with learning disabilities.

But Linna remained determined to have the twins and give them the best lives possible.

'There's a reason why we were chosen'

"I kind of told my husband, I said, 'We can't determine how God decides who's going to parent special children," she said. "There's a reason why we were chosen. We just have to have faith that we're going to provide them with a great life."

Dr. Gwyneth Hughes, a pediatric neurosurgeon, performed surgeries to close each infant's spinal openings.

She believes Micah will walk one day, but Cairo likely will not.

Still, Linna chooses to remain upbeat and positive. She has a 10-year-old son, also named Eddie, and it took the couple several years to conceive another child. Now, they feel blessed to have twins.

"There's still hope so we'll just take it one day at a time and let them get strong."

The doctors who have worked closely with the family are inspired by Linna's strength.

"To find a family that's so steadfast in their desire to want to have these children, even knowing what comes along with it, is really unusual," Dr. Hughes said.

"It's an honor to deliver any baby, but when you know the family so well, it's even more special," added Dr. Wolfe.

A meaningful Mother's Day

Linna isn't sure how long her new sons will remain in the NICU or when they'll come home to Mahoning County, but she's certain of one thing: Mother's Day will never be more meaningful.

"This is the most life-altering Mother's Day that I've ever had and it's a great one for good reason," she smiled. "It just makes you look at the things that we go through just to have that title mom."