Support During NICU Stays, Losses, and Beyond

We’re always inspired by the stories of people who have experienced challenging situations and, from those experiences, create something meaningful and helpful for those after them. We had the pleasure of speaking with and interviewing one of these people, Kelli Kelley, the founder of Hand to Hold.

Hand to Hold, helps families before, during, and after a Neonatal Intensive Care Unit (NICU) stay and through infant loss by providing powerful resources for the whole family, and most importantly, one-on-one mentoring from someone who has been there. Their resources include in-hospital programs, articles and blogs, podcasts, social networks and trained peer mentors. All of which were designed with the emotional, physical, and social needs of the whole NICU family – including siblings and grandparents. NICU graduate and bereaved parents are trained as certified Peer Support Specialists through the state of Texas. These Family Support Specialists use their personal and professional experiences to ensure all Hand to Hold programs and services work for NICU families, at every step in the journey.

Why was Hand to Hold created?

From left to right: Jessica, Naomi, and Kelli Kelley

From left to right: Jessica, Naomi, and Kelli Kelley

Kelli Kelley shared with us that she is a mother of two babies born pre-term. Her son Jackson, who is now 18 years old, was born at just 24 weeks gestation and weighted only a pound and a half. He was in the NICU for 4 months facing tremendous challenges. While Jackson received amazing medical care, Kelli realized there was little to no support for the families of the NICU. Because of this, mothers and fathers have a much higher risk of postpartum depression, anxiety disorders, and PTSD. But having support early on can mitigate that not just during the NICU stay but afterwards as well. Once a baby graduates from a NICU stay, they are still medically fragile and have weak immune systems, causing many mothers to go into isolation. They may miss work for longer, have financial challenges, and higher risks of separation and divorce. All of this led Kelli to ask: “How do we fix this?” She went to many people and organizations saying this was a need and was lacking in our healthcare system and in our communities, but no one was ready or willing to take on this problem. She goes on to say that 500,000 babies are born requiring NICU stays each year and that is in addition to babies who pass away. This means there are a lot of families without the critical emotional and mental support, until now.

How does Hand to Hold help mothers, babies, and their families?

During Kelli’s NICU stay she felt very sad and alone, not knowing anyone else who had a baby prematurely. She felt very little hope for his survival and guilty that she delivered him pre-term. She tried to process that automatic bond that she thought would have been there, but wasn’t. She didn’t even want to go see him in the NICU and felt even more guilty for not wanting to. It wasn’t until a friend of a friend who also had a baby prematurely, reached out to her. Kelli said the impact of having a peer mentor throughout her NICU stay and after Jackson came home, having this one mom who was able to share her experience and how well her son was doing, gave Kelli the hope she needed. Because of this impact, Hand to Hold was created. Now, Hand to Hold matches families across the county and globally, with other families who have had a similar experience. Matching includes connecting current NICU families with NICU graduate parents who have received training through Hand to Hold’s peer mentor training program. When a family contacts Hand to Hold, they are matched usually within 24-48 hours with a family who had a like experience. Support provided includes phone, email, and text communication that works better for the schedules of both families.

What is the timeline of support that is received by the families?

Kelli explains that there is no timeline, it is whenever a family is ready to receive support. This could be days after the birth or years later. Whether for their own mental health challenges or if the baby is continuing to have problems, someone can request support at any time. Some families receive a few phone calls and move on, others stay connected to their match for years. Recently a family contacted Kelli and she had not seen the outcome for that child yet, the little girl was in gymnastics and thriving at life; the parents expressed how thankful they were and how helpful the support they received was.

Other than emotional support and a sense of community for the mothers and their families, what other resources do you believe people need/want who have/had a baby in the NICU?

It is important to Hand to Hold to fill that education gap of the risks of postpartum depression, anxiety, and PTSD by helping the families understand the signs and symptoms, and when to seek help. The education also includes the challenges a baby may face ever years later and what are the milestones to be expected of a baby born early.

And how about a family that had a loss?

When Hand to Hold was first founded, Kelli had not thought about bereaved families because she felt there were already great organizations handling grief and loss. But a loss after a NICU stay is a unique experience. You had the traumatic birth, your baby may have been in the NICU for weeks or months, and then you have the loss… Or you have twins and you lose one of them, but there’s also the loss of the expected pregnancy. “Most of us have this idolization of what pregnancy and birth should be like” says Kelli, “placing your baby on your chest and everything playing out like in the movies…” hence, there is a loss that families need to process.

“Just because you didn’t get that birth experience, doesn’t mean you can’t find joy even during a NICU stay and that you can’t celebrate those milestones that your baby achieved.”

However, for bereaved families, it’s about coming along side them with peer mentorship and support. Kelli mentions how Hand to Hold recently introduced a podcast for families who have experienced different types of loss, interviewing families and how they processed those experiences, as well as interviewing experts in grief and loss. Her goal is for families to find the podcast very hopeful and that people recognize families are able to heal by helping others.

What does Hand to Hold mean to you?

What Hand to Hold means to Kelli is that other families won’t feel alone. Even with a supportive husband, family, community, church, mothers can still feel alone. Hand to Hold is not just a non-profit, but a community to bring together like-minded NICU families that have experienced very unique journeys who can support each other not just during the NICU stay, but for a lifetime.

What is your vision for Hand to Hold?

Kelli says Hand to Hold is focused right now on putting their hospital program in hospitals all across the U.S. On a national level, Hand to Hold offers peer-to-peer support and podcasts, but in Austin, Texas, they have Hand to Hold Family Support Specialists who work in NICUs along side the families. Kelli and her team are wanting to expand their Family Support Specialist program across the country ensuring all families get support throughout their NICU journeys. They also want to expand their MilestoneBead program which celebrates milestones including feeding, changing, and bathing your baby for the first time.

Best example of the way you’ve seen Hand to Hold’s work make a difference:

A particular moment that stands out to Kelli was when a NICU director shared how she witnessed a Hand to Hold Family Support Specialist sitting on the floor crying with one of the new moms. Kelli goes on to say: “Before Hand to Hold, who would have been that person? Watching my son be resuscitated and not having anyone around, I felt so alone. We are now filling that gap of emotional support, because that’s not the role of the NICU nurse, nor the neonatologist, not even the social worker… so that’s Hand to Hold’s sweet spot.”

What would you say to a mother whose baby is in the NICU or who has lost a baby?

Kelli says that sometimes it’s beyond words… Physical presence, emotional support, a hug, someone holding your hand, and being there. Someone saying “I know what you’re going through and how much it hurts. You did everything right.” Kelli explains that we now have this support and community… that you are a mom, and to those who have lost a child, you’ll forever be a mom. “You’re not alone and will forever be apart of our community.”

How can family members and friends help NICU parents before and after the stay?

Kelli emphasizes on the importance of family and friends recognizing that even after a NICU stay, it’s not over... It’s not over for the baby nor the parents, even if the baby is now healthy and thriving. She encourages the friends of the parents to ask how the parents are doing. A lot of the time people just ask how the baby is doing, which is important, but often the families may still be struggling. She mentions that besides offering emotional support, friends who want to help can do practical things for parents, such as sending a meal, cleaning their house, mowing their lawn. Kelli encourages family members and friends to remind the parents to take care of themselves and use the support offered to them from those who care.

“When we support, we see families wanting to give back once they get their footing.”

For more information on the different resources and programs Hand to Hold offers, please visit their website here.

From left to right: Leigh Ann Torres, Naomi, Jessica, and Zoe Roush

From left to right: Leigh Ann Torres, Naomi, Jessica, and Zoe Roush