For expecting parents, the months leading up to the birth of a child provide time to plan and prepare. But when all that planning and preparation is thrown off course unexpectedly, parents can be left in a world that’s difficult to navigate.
Denise Zahui Gboignon knows that world well.
At just 24 weeks pregnant, Gboignon went into labor. While she tried to stop contractions, nature didn’t cooperate, and her son, Orion, was born on Feb. 7, 2018.
He was quickly whisked away to the NICU at the hospital.
“It’s a scary time because you just don’t know what’s happening,” Gboignon said. “The doctors and nurses tell you what’s going on and keep you up-to-date, but I would find myself wanting to know more or not really understanding it all.”
Gboignon said she felt alone and isolated, a common feeling among parents of NICU babies. Becoming a new parent can be difficult enough. But add the stress of the NICU — with breathing and feeding tubes, countless doctors and nurses — and parents can quickly become overwhelmed.
A social worker told Gboignon about the free new My NICU Baby app from the March of Dimes, a national nonprofit organization that advocates for the health of mothers, mothers-to-be and babies, including preventing birth defects, premature birth and infant mortality.
A guide for parents
The app works as a one-stop shop for parents trying to cope with the NICU experience and the transition home.
“My NICU Baby empowers moms and dads with the knowledge and tools they need at an overwhelming and scary time in their lives,” said Stacey Stewart, president of March of Dimes.
The app’s features allow families to:
- Watch educational videos on parenting topics;
- Learn the vocabulary of the baby’s care;
- Use a checklist to keep track of questions for health-care providers, make to-do lists or take notes;
- Track feedings and breast milk pumping;
- Track weight gain/loss for their baby;
- Use a fun “photo booth” feature to add filters to new or existing snapshots;
- Participate in a March of Dimes online community of parents;
- Give feedback to the March of Dimes.
Created from scratch
While the March of Dimes has long offered support for NICU families — including printed materials, staffed programs and educational opportunities throughout the country — the organization knew it needed to enhance the NICU experience.
“Delivery of education and information is changing so much, and over the last four years our hospital partners and parents wanted information in an additional format,” said Lori Gunther, senior director of NICU Innovation at March of Dimes. “We had an ethical responsibility to take our materials and put them in a digital format, so no matter where you are, you can get the information and education.”
Gunther knows what it’s like to have a child in the NICU. When she started work on creating the app, she relied on her own experiences.
“I didn’t know what to ask when my baby was in the NICU,” Gunther said. “I thought, ‘What would I have wanted?’”
Gunther came up with concepts and then tested them with NICU families. The app launched in late January 2018.
Initially the goal was 5,000 downloads in the app’s first year. As of July, that number stood at more than 4,600.
“What I really like is that if your baby has gastroparesis, you can learn about that. You can look it up and it will tell you what it is in plain language,” Gunther said. “It will tell you the diagnosis, possible treatments and give you some questions you might want to ask.”
The app also includes resources for single moms, adoptive parents and parents of a child with a serious health diagnosis.
Hope and healing
Gboignon used the weight and feeding trackers on the app while her son was in the NICU.
“Once I was going to the NICU on a regular basis, the app helped me understand medical terms. And when I looked at stories from other moms on the app, I didn’t feel so alone in all this,” she said.
Orion came home from the hospital in June, more than three months after his birth. Gboignon still uses the app for tracking his weight and feedings and for connecting with other moms using the app.
“The My NICU Baby app gets you through the journey and makes you realize you’re not the only one,” she said. “I know it’s giving others hope.”
Rachel Brougham is a mother of a NICU graduate. She who works as a freelance writer and editor in Minneapolis.