My daughter was in the NICU (Neonatal Intensive Care Unit) for 56 days. For the first week of her life, she lived in an incubator and my husband and I weren’t allowed to hold her. We watched her fight for each breath with the help of a machine. We learned to sit beside her and keep one eye on the monitor tracking her vitals, so that we were ready to call for help even before the machine registered an issue.
We celebrated her good days and worried over her bad days. We did it all within a world that had shrunk to the size of an incubator. Most days we were lonely and scared, and we often felt bewildered and isolated as we navigated an unfamiliar medical world to protect a baby that needed more than we could give her on our own.
Then we brought our baby home. The days, weeks, and months after we left the hospital were just as difficult as the days in the hospital—and in some ways more difficult. We no longer had the watchful eyes and expert hands of the nurses by our side. At home, we were well and truly alone, left to care for a baby that had complex medical needs and considerations.
To NICU parents, our story probably sounds familiar. The fear, isolation, and bewilderment are probably all too relatable, and no doubt COVID has compounded all of it for new NICU parents.
A new mobile app is seeking to change that familiar story. Hand to Hold, a national nonprofit organization that offers support for NICU parents, released an app that provides NICU parents with the emotional and mental support they need during their baby’s NICU stay and in the days after.
“Creating a mobile app is essential to help eliminate barriers to support for all NICU parents,” said Kelli Kelley, Hand to Hold Founder and CEO and NICU parent in a press release. “This app will provide access to emotional care for NICU parents regardless of financial means, cultural barriers and other inequalities in the healthcare industry.”
Features of the new app include:
- Access to one-to-one support from Family Support Specialists—a service that was previously only available in hospitals
- Multiple support groups to cater to different journeys and backgrounds – groups are available for current NICU families, NICU graduates, high-risk pregnancies, NICU dads, and more
- Private virtual chat community with certified Family Support Specialists and other NICU parents
- Access to NICU-related podcasts, including podcasts for NICU professionals and families who’ve experienced loss
- Comprehensive resource library curated to your personal profile
- Virtual webinars
Within moments of downloading the app, I’d found another mother with a NICU baby that was also graduating from elementary school this year, and then another with a NICU baby getting ready to graduate from high school. Even just knowing those mothers were out there brought me comfort.
Hand to Hold’s mission is to create a world where every NICU family has a trusted support network to walk with them through their NICU journey and beyond. The app was created to make connecting with other NICU families and NICU professionals as easy as swiping your finger across your phone. That’s invaluable.
In an article for The Atlantic in 2018, Richard J. Shaw, a professor of psychiatry and pediatrics at Stanford University’s Lucile Packard Children’s Hospital, highlighted the importance of peer support, connection between NICU parents. He said, “Speaking to a parent who’s been through something similar and learned how to cope with it is tremendously powerful.”
The app is free to all NICU parents thanks to support from Huggies. Sarah Inbau, Huggies North America Brand Manager and a NICU parent herself, wrote, “Many of us at Huggies have been NICU parents and have experienced the emotional impact of a NICU stay. While no two experiences are the same, the personalized support Hand to Hold offers parents through this new app is transformative and we’re honored to be able to help more parents.”
NICU parents have their own vocabulary. They have their own set of worries that linger for months and years–maybe even decades. They know what every beep from every machine means, the risks and benefits of every procedure and surgery, and how isolating and terrifying a NICU stay can be. The app from Hand to Hold is one way to ease some of that isolation and terror. It’s a way to connect in an interactive and personal way with professionals who understand what every beep means, too. Just as importantly, it’s a way for parents to reach out to other parents who are going through the same thing.
The app is available in both English and Spanish. You can easily download the app by searching “Hand to Hold” on Google Play or in the Apple App Store.