TwinGo & Project Sweet Peas Blog Collab- NICU Peer Support
NICU Peer Support
A community of light and hope
By Corin Nava
Corin is the proud parent of 6 and the Co-Founder & Executive Director of Project Sweet Peas, a nonprofit organization dedicated to providing support to families in the NICU, and to those who have experienced a pregnancy and infant loss.
For as long as I can remember I have been a planner. Lists and schedules help me feel in control and prepared. Being unprepared and not knowing what’s coming next can cause severe and sometimes debilitating anxiety. So when we were preparing for the birth of our first child, I did what I do best, I planned. I scheduled the hospital tour. Researched what to expect. Created a birth plan. I was ready to become a Mom, or so I thought.
Everything went (almost) as planned, right up until he was born. It should have been that magical moment when they placed my newborn child on my chest. The moment I had dreamed about, where I looked at my son for the first time, fell in love, and became a Mom. What replaced that moment was pure chaos.
They took him away, with little explanation as to why. All we knew was something was horribly wrong.
We were rushed to a bigger hospital, where hours later I would finally get to meet my son. In pain, exhausted and extremely anxious, I saw the sweet baby boy I had given birth to hours earlier, hooked up to tubes and wires. Machines were keeping him alive.
We were thrown into a world we never dreamed of, the Neonatal Intensive Care Unit (NICU).
Every year, half of a million babies are admitted to the NICU, and very few are emotionally or financially prepared for this extended hospital stay. For new parents, it is overwhelming, uninviting, and terrifying. It most definitely was for us. The majority of next two months were spent in a tense, anxious state of fear and dread. I spent hours silently sitting at the bedside, staring between my child and the beeping monitors, begging for a miracle.
The NICU exists to save critically ill babies. Most are not built for parents and families.
So what happens to parents who are already struggling? While the focus of staff is on the health and well-being of the babies, who has the bandwidth to ensure the families have the emotional and financial support and resources they need when their lives have been flipped upside down? Who can provide a safe place for these parents to process what they are going through? Who has the capacity to set aside judgement and allow them to reach out and ask for the assistance they so desperately need? NICU nurses and staff so often go above and beyond their job description to do the best that they can, but their priority is on the care of the babies.
In an overextended and struggling healthcare system, the needs of the parents are too often overlooked.
The NICU is often referred to as a “roller coaster” or a “war zone” as parents helplessly watch their tiny newborns fight for life. It’s not surprising that NICU Moms are 3 times more likely to develop postpartum depression (PPD), and both NICU Moms and Dads are at risk of developing Post Traumatic Stress Disorder (PTSD). Even for those who do not develop PPD or PTSD, the experience is often traumatic and life-changing.
Our first NICU experience left myself and my husband emotionally broken and scarred.
We did not have a happy ending and after 2 months in the NICU, our son passed away in our arms. We were sent home with a small box of memories, trying to figure out how to pick up the pieces of our lives. I was devastated, lost, and found myself in a very dark place. But in that dark place, I also found a source of light, reaching out from other parents who had been there. Those early connections I made became my saving grace—they were the rope I needed to start climbing out of the darkness to find some glimpse of light and hope once again.
I could never go back to be the same person I was before the NICU, but I could find a way forward with the understanding and acceptance of this new sense of connection and community.
“We rise by lifting others.” -Robert Ingersoll
Peer support in the NICU has been proven to empower parents, reduce depression, and support overall parental well-being. Over the past 15 years I have seen many strong, resilient parents (and grandparents) step up to become advocates for NICU families. Because of their experiences, they have heard and answered the call to support those who will walk the path after them. They have risen up to build and be a driving force of many incredible nonprofit organizations who exist to fill the gaps in support for NICU families. Today, more than ever, there are many extraordinary challenges that NICU families must face, but they don’t have to do it alone. The NICU community is ever evolving and growing stronger to provide the support needed.
I have had the honor and privilege of being a part of one of these organizations, Project Sweet Peas (PSP) —a community of volunteers that have come together from all over the country.
Our volunteers continue to inspire me, and hearing from the families we serve renews the passion to keep it going.
“Project Sweet Peas (PSP) gave us support, comfort, and such kindness during the most difficult period of our lives… The days I wanted to give up I remembered that I wasn’t alone. 154 days in the NICU with Charlie and PSP helped us connect with our baby that didn’t feel like ours.”-Amanda Tucker, NICU Mom to Charlie & Ollie
As we celebrate NICU Awareness Day on September 30th, let’s take a moment to recognize and acknowledge the importance of peer support in the NICU community. I will forever be grateful for that light in the darkness that brought me through and hope that we can continue to work together to shine that light for others.
For more on Project Sweet Peas and NICU Awareness Day visit
www.projectsweetpeas.com
www.nicuawareness.org
SOURCES:
Hall, S., Ryan, D., Beatty, J. et al. Recommendations for peer-to-peer support for NICU parents. J Perinatol 35, S9–S13 (2015).
Lefkowitz, D. S., Baxt, C., & Evans, J. R. (2010). Prevalence and correlates of posttraumatic stress and postpartum depression in parents of infants in the neonatal intensive care unit (NICU). Journal of Clinical Psychology in Medical Settings, 17(3), 230–237
This blog was contributed by Project Sweet Peas as a guest blogger for NICU Awareness month. To read more about how TwinGo is supporting Project Sweet Peas & other organizations this month, click here.
