When she was 22 weeks pregnant with twins, Bethany Watkins had an ultrasound. The mom-to-be was preparing to undergo surgery the next day, and she felt jumpy and scared.
Her babies had developed twin-to-twin transfusion syndrome, a rare condition for identical twins who share a placenta: One twin receives too much blood, and the other not enough. Without in utero surgery, the babies could die.
The ultrasound was a routine part of surgery prep, but what doctors found was not. Watkins was fully dilated and ready to give birth.
“It was so very unexpected,” Watkins told TODAY Parents. “Within a few hours ... we had the girls.”
Watkins delivered the twins on April 23, 2019; their due date wasn’t until Aug. 25. She and her partner, Dave Barylski, were terrified. At 22 weeks and 2 days old, Everlei and Rylei were just viable and are some of the youngest surviving micropreemies in the world. For six hours, Watkins couldn’t even see her daughters; when she did, she worried about touching them. They weighed about 1 pound each, their skin was translucent and their eyes were fused shut. Wires and tubes snaked from their tiny bodies as they lay in incubators.
“I didn’t even know if I was going to see them alive,” Watkins said. “I went to hold Rylei's hand for the first time and I touched her hand and it was just sticky. ... I was scared I was going to peel her skin off.”
Watkins was able to meet her daughters thanks to the work of the neonatal intensive care staff at St. Louis Children’s Hospital. Dr. Barbara Warner said the team first had to help the girls breathe by inserting tracheostomy tubes and connecting them to ventilators.
“The lungs are not mature enough to be able to breathe,” Warner, the hospital's chief of newborn medicine, told TODAY Parents. “Even though the babies were incredibly tiny, they were just a little bit over a pound. That put them at a little bit higher birth weight than many other babies born at this early stage, and that (gave us) a very small sliver of hope.”
Doctors had to help Everlei and Rylei maintain their body temperature. They also provided a slew of interventions to prevent blindness, help the girls with digestion, and protect their brains and central nervous systems.
A few times during their 218-day stay in the neonatal intensive care unit, the twins experienced brain bleeds and their parents thought they might lose them. Warner said helping micropreemies survive involves providing proactive treatments rather than treating them after problems develop. While medical interventions remain essential to helping micropreemies thrive, their parents play a big part in their health too.
“Most important is having the parents at the bedsides and having that little voice, that parental touch, that interaction,” Warner explained. “That’s a normal interaction, not a heel stick for blood draw, not an adjustment for a ventilator.”
For Watkins and Barylski, parenting the twins took a lot of quick thinking and strength.
“It was actually pretty terrifying,” Watkins said. “It doesn't change the amount of love you have for them but it definitely puts it into a different point of view. It's a different love. It's ... a strong love.”
Having each other and a deep faith in God helped the couple cope. The girls finally went home before Thanksgiving. They’re still on oxygen and require frequent examinations. It’s tough to tell what neurological delays or other complications they might have. Warner said that there are so few micropreemies born at such an early stage that experts remain unsure about their long-term progress.
“When we talk about moderate to severe problems long term, what we're talking about is, from a behavioral standpoint, the children are at higher risk for autism. They are at higher risk for cerebral palsy, which is a movement problem that can be fairly mild (to more severe),” Warner said. “It’s quite a wide spectrum.”
Still, the family feels lucky.
“I'm happy to be home with our 8-year-old and have some sense of a normal family, but it's also very hard because they're still on oxygen and they still have medical needs that you wouldn't have with just normal kids,” Watkins said.
The parents have a Go Fund Me page to help cover medical expenses and a Facebook group where they update loved ones on the girls' progress.
Barylski said he's looking forward to making holiday memories with Everlei and Rylei, and he's so grateful that they're finally home.
“It is amazing,” he told TODAY Parents. “It’s been a great feeling.”