Building a Powerful NICU Family Support Network: A Guest Article from Hand to Hold.

Posted on Sep. 15th, 2015 at 1:45pm

September 15 is National Neonatal Nurses Day, when we recognize the outstanding efforts that these outstanding medical professionals provide to infants and families at, perhaps, the most vulnerable time of their lives. Kelli Kelley, founder and executive director of Hand to Hold, a nonprofit focused on support and education for families of babies who spend time in the Neonatal Intensive Care Unit (NICU), shared her experiences with these outstanding healthcare experts.

By Kelli Kelley

Founder and Executive Director, Hand to Hold

I often flash back to 2000, when my life changed forever. I was in labor with my first child, Jackson. While I knew it would be a life-altering experience, it wasn’t what my husband and I envisioned. My son was coming too early, nearly four months before his due date.

Jackson was delivered via C-section and taken immediately to the NICU, where he was cared for by the skilled medical professionals we celebrate each September 15th – National Neonatal Nurses Day. When I awoke from anesthesia, I had many questions and few answers. Why did I give birth so early? Was Jackson going to be OK? How would we care for him?

In the weeks and months following Jackson’s birth and the ups and downs of his surgeries, diagnoses and treatments, depression and stress were my bedfellows. I didn’t have anyone to talk to who could truly understand what I was going through and provide the support I desperately needed. I wanted to be able to hold the hand of another NICU mom, who could help prepare me for challenges she had already faced and give me the hope that was so hard to find.

What started as a simple idea to form a network of NICU families 15 years ago is now a nationally known, leading nonprofit based in my home of Austin, Texas, with a staff of 14 that connects tens of thousands of NICU families with one another and the help they need. Hand to Hold celebrates its fifth birthday as a recognized nonprofit this year.

As founder and executive director of Hand to Hold, I’m proud that our organization helps so many families with stories just like mine.

We are guided by a simple mission – to provide a welcoming community for NICU families by offering support, comfort, education and understanding. Hand to Hold supports this vision in many ways, from hosting an online parent support forum with more than 19,000 families to offering individual peer support, as we did for to more than 800 people in 2014 alone.

The majority of our staff members are parents of children who spent time in a NICU, so they have a familiarity with difficult circumstances and a passion for helping families during challenging times. Our trained volunteers serve as peer-to-peer mentors across the country, helping families navigate the medical and personal challenges they face. We also offer support programs for the siblings of NICU babies, along with a powerful Preemie Babies 101 blog written by a team of 25 NICU and bereaved parents from all over the United States and Canada.

Our vision and goal to provide not only support, but also education, awareness and advocacy wouldn’t be possible without our partners, such as Mead Johnson Nutrition, which give us the tools to expand our network to reach more families in more hospitals across the country. Through partnerships such as this, we are connecting families in their time of need to the hospitals that serve them by providing support and education on a variety of topics important to NICU families – from antepartum care and bonding with your medically fragile newborn to issues such as nutrition, discharge and bereavement.

Mead Johnson partners with us on the annual NICU Heroes Award. The award, now in its third year, gives families the opportunity to recognize two NICU professionals, including neonatal nurses, who have provided compassionate and exceptional care beyond what is expected. Honorees receive much-deserved recognition, along with a donation to the pediatric charity of their choice and Hand to Hold’s nationally recognized NICU Resource Library, a collection of reliable, educational handouts for parents of NICU babies.

Hand to Hold has accomplished a lot in our first five years as a recognized non-profit. During our next five years and beyond, we will continue to grow our online community and deliver more needed educational resources and emotional support to NICU families. Together with our partners, we remain committed to providing those families with a hand to hold at the time they need it most.

For more information, visit