9/27/17

Babies overcome impossible odds, reunite with NICU staff

Milestones and memories make a lifetime. Linda Fehrenbacher, 60, and her son Ben Williams, 40, will celebrate with a special trip to Urbana for the Carle Neonatal Intensive Care Unit (NICU) Reunion on October 7.

Fehrenbacher felt inspired to attend the reunion this year as her son turned 40 – a birthday she wasn’t sure he’d reach. In fact, he wasn’t expected to survive his birth.

Williams was born at 34.5 weeks, weighing 3 pounds and measuring 16.5 inches long in July of 1977— shortly after Carle’s NICU opened. Now many years later, she’s returning for the annual Carle NICU reunion open to other local families.

Most of Fehrenbacher’s pregnancy was routine but by mid-June she experienced swelling in her hands and feet and pain in her back. She grew frightened when she started seeing stars and her blood pressure rose. Closely monitored for a few days, Fehrenbacher was suffering from life-threatening pre-eclampsia.

Call it mothers intuition, she knew her son was in distress and the doctors backed her up. They said, ‘I don’t know if I can save your baby. I’m worried about you,’ she said.

“They put me in a darkened room and I had to stay in bed. If I had waited even just a couple of days to go in, we both would have died – me and Ben.”

Williams’ grandma and grandpa had just bought a Polaroid camera, so there are tons of pictures of the “miracle baby.”

Looking back at those pictures, Williams said he can’t believe he was so tiny. He’s attending the reunion to share a side of his life with his wife and children that doesn’t really get talked about much.

“Having my own kids, it’s made me very thankful that Carle gives kids an opportunity to grow,” he said.

Supported by the Carle Center for Philanthropy, the upcoming NICU reunion offers Williams and his family a chance to participate in games, have snacks and climb on the indoor playground. The small babies are now growing up and children of many ages celebrate milestones and even interact with thriving adults once in their shoes.

Like many, Williams had obstacles to overcome. But he simply battled. “They didn’t want anyone to get attached to me because they didn’t have a lot of hope for my survival,” he said.

Fehrenbacher remembers taking it just one painstaking hour at time. Carle physicians and nurses cared for son through a chest surgery at birth and remained invested in him. They coached mom on developmental concerns for Williams’ future, predicting he’d be small, and have a hard time learning to walk or talk.

Admittedly, the first two years were difficult with frequent infections and doctor’s visits, but determined from the beginning, Williams proved them wrong.

“Ben is strong, athletic, and smart. He’s a fireball,” Fehrenbacher proudly said of her son. Williams said that being a preemie is part of his experience, but it doesn’t define him.

The NICU looks quite a bit different today than it did years ago. Carle recently expanded care for the smallest of babies opening a Small Baby Unit in July.

“I know care for preemies has evolved and changed over the years. It affects the community as a whole but this unit played a massive role in my life,” Williams said about returning after many years away in the Chicago suburbs working in education as athletic director at East Aurora High School.

After another NICU mom mentioned that her family was attending a reunion in the Chicago area, Fehrenbacher encouraged her son and his family to consider attending Carle’s. They will connect, acknowledge and celebrate with other families whose lives were changed.

Carle NICU Reunion will be October 7 from 10 a.m. – 1 p.m. at First Christian Church in Champaign. Children may come dressed as their favorite Disney™ character. For more information, please email carlenicureunion@carle.com.

NICU nurse Kaci Lowery, says families connect with staff at one of the scariest times in their lives and the bond remains long after they leave.

“It’s not unusual to receive cards, photos and updates for many years after the babies leave our care. It’s great to actually see them in person.”

Carle NICU Reunion will be October 7 from 10 a.m. – 1 p.m. at First Christian Church in Champaign. Children may come dressed as their favorite Disney™ character. For more information, please email carlenicureunion@carle.com.

 Ben Williams looks forward to including his own children with daughter Zoey, 21 months, sons Wyatt, 11, and Elias, 9. The children will join in the festivities dressing as their favorite characters.

“I know a lot of the doctors and nurses weren’t there when I was born but I still want to thank them for being there for me, my family and for all families.”