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The Painful Story Of A Reluctant Social Entrepreneur

This post was originally produced for Forbes.

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Kelli Kelley is a reluctant social entrepreneur.

She was 24 weeks pregnant–16 weeks before her due date–when a sharp pain in her abdomen signaled something was wrong. She called her mother and mother-in-law for guidance and they told her to call 911.

It was a good thing she did. In the ambulance, they confirmed she was in labor and that they wouldn’t be able to stop it. At the time, 24 weeks was the medical limit for delivering a baby that could survive.

She says that limit has now edged a week or two lower in the 16 years since her son Jackson was born.

He is now a healthy 16-year-old boy, who is thriving in school, learning to drive and wanting to date. But it wasn’t always easy.

“There were lots of setbacks,” she says. “We thought we might lose him.”

Not even three years later, Kelley found herself with a baby in the neonatal intensive care unit (NICU) once again. Her daughter was born at 34 weeks. She had a set of challenging, scary issues as well. She is now a healthy young teen.

The issues associated with raising children born prematurely never really end. To this day, Jackson is required to take meds that keep him healthy.

While premature children qualify automatically for Medicare or Medicaid, completing the paperwork required became a half-time job for her. Once a family leaves the hospital, she says, many of the benefits run out.

Some of the medicines the kids have needed over the years cost thousands of dollars per dose, Kelly says.

Overall, the experience is anxiety inducing. About 70 percent of parents experience some form of anxiety disorder; many are diagnosed with post-traumatic stress disorder or PTSD after having a child spend time in the NICU.

After experiencing so much of this herself, Kelley began advocating for others to do more to support parents of premature babies. The typical response she got was, “Why don’t you do it?

So she did.

Kelley organized Hand to Hold, a national, peer-to-peer based counseling service that provides trained volunteers who have been where NICU parents are now. So, if you have a child in the NICU suffering from a particular set of issues, the organization will look to match you up with a parent who has been through the same thing and trained to help you through it.

Kelli Kelley, Hand to Hold

“I’m glad I didn’t know what I didn’t know,” Kelley says about how hard it has been.

The nonprofit generated revenue of $578,000 in its last fiscal year, has nine full-time staff and a 13-member board. Hand to Hold provides in-person peer-to-peer support in three Texas hospitals in addition to the national on-line service. Recently, Kelley launched a podcast called NICU Now that is quickly gaining a following.

Revenue for Hand to Hold comes from individual donations (14%), corporate funding (28%), events (48%) and foundation grants (10%).

Amy Popp, senior brand manager, Huggies Brand, Kimberly-Clark, who supports Hand to Hold, says,Hand to Hold is a wonderful organization that provides services and support to parents of premature babies who may feel anxious, lost or alone. My favorite aspect of Hand to Hold is the peer-to-peer support system it offers outside of the hospital.”

Popp notes that the partnership is a good fit for the Huggies brand and gives the company a way to fulfill its mission to help babies thrive.

Hand to Hold is also working to change the treatment approach for NICU babies. “We are proposing that providers adopt a more radical approach, a truly Family Friendly model. This would recognize that the health of the NICU infant is affected by the mental and emotional health of the family,” Kelley says.

“By pioneering and championing fundamental changes in the delivery of mental and emotional health during the antepartum period, throughout a NICU stay and after hospital discharge, I hope to improve outcomes for medically fragile babies and their families,” she adds.

“I’m confident Hand to Hold will continue to grow and bridge the service gap that currently exists for families who have a child in the NICU or for those families who have experienced an unimaginable loss. The passionate people at Hand to Hold are key to their future success and expansion across the country,” Popp says.

Commenting on her difficult journey, Kelley said, “I never thought of myself as a social entrepreneur. But after years of struggling to find support following my son’s traumatic early birth, I knew I had to take on this role.”


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Devin is a journalist, author and corporate social responsibility speaker who calls himself a champion of social good. With a goal to help solve some of the world’s biggest problems by 2045, he focuses on telling the stories of those who are leading the way! Learn more at DevinThorpe.com!

 

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