Photo Courtesy Jennifer BeattyPhoto Courtesy Beverly Demafiles Photography

Nonprofit connects families of premature babies for support

Despite support from family and friends when her two children were both born premature, Kelli Kelley said she never felt more alone than during and after her childrens stays in a neonatal intensive care unit.

Support services were not available for Kelley when her son was born at 24 weeks, but the sister of a high school friend called her to share her own preemie experience.

Thats where the seed was planted of what that friendship and mentorship meant to me, Kelley said. That was the only other person I had known who had a baby as small as mine.

In 2011 she started the nonprofit, which offers resources for NICU families or those who lost a baby. It also publishes articles and blogs written by former NICU parents and health care professionals. The program initially started at St. Davids HealthCare, but now more than 80 hospitals throughout the U.S. use its resources.

The peer-to-peer program matches NICU families with mentors who have had similar NICU experiences to offer support.

Parents just want to know that, You have a 24-weeker, and hes 13 and plays football, she said. Not everyone will have that outcome, but its nice to walk through that experience with someone else to provide hope and inspiration for you in a very dark and difficult time.

Hand to Hold also has a graduate handbook that prepares families for the preemies first year. Kelley said life after the NICU can be just as challenging because of a babys ongoing health issues as a result of being born premature. She said NICU families often face higher risks for depression, post-traumatic stress disorder, divorce and child abuse.

Both of Cedar Park resident Kathy McClellands sons spent time in the NICU. She came across Hand to Hold after the birth of her second son, who was born at 37 weeks with special needs and spent weeks in the NICU. McClelland said she had a lot of anxiety about the medical decisions she had to make for her son and that friends and family did not understand what she was going through.

Hand to Hold provides very positive feedback from other parents, McClelland said. [My mentor] listened a lot, and I didnt feel judged.

Because many people turn to the Internet first for medical information, Kelley said she aims to be a credible source. Online resources are easier for NICU families to access because they are often isolated in the NICU or at home with babies who have immature immune systems, she said.

Hand to Hold, 855-424-6428, www.handtohold.org, www.preemiebabies101.com