Helping Other Parents After My Personal NICU Journey

Having a baby in the NICU can be a scary, isolating experience. But NICU parents aren't alone – every year, 10 to 15 percent of babies are admitted to the neonatal intensive care unit (NICU) for premature birth, heart problems, breathing issues and more. In 2010 my son Xavi was one of those babies, and my wife and I spent many sleepless days and nights traveling between our house and the hospital, talking with his medical team as we tried to best help our child.

When Xavi finally returned home happy and healthy, I reflected on our journey. My wife and I are both doctors, yet we often struggled to understand what was going on in the NICU. All of Xavi's doctors and nurses were dedicated and caring, but had a number of babies to take care of and were often rushed. The experience inspired me to create NeoCare Solutions, which combines experienced clinical and emotional support with the convenience of mobile technology.

Here's how it works:

• NeoCoaches reach out to eligible parents who have a baby in the NICU
• Once parents enroll, they receive a tablet with the NeoCare app and are connected with their dedicated, experienced coach
• The NeoCare coach is available via phone, email or chat within the app to answer questions, provide information and advise on how to best support the team of NICU nurses and doctors
• Parents have a wealth of NICU-related information and articles through the app
• Once the family returns home, the NeoCare coach and app are available to help with the transition through the baby's first birthday

We introduced NeoCare commercially in January. To date, we have helped more than 700 families with our users reporting a 96 percent satisfaction rate. Below are two of their stories.

Madeline was born at 33 weeks via an emergency C-section after her mom, Jacquelene, was admitted to the hospital with pre-eclampsia. Madeline was sent to the NICU and Jacquelene spent two weeks in the hospital as doctors worked to get her blood pressure under control.

“It wasn't the normal, happy experience that you always imagine when you think about having a baby,” said Jacquelene. “I was one of the only moms in the hospital who didn't have a baby coming back to me.”

When he returned to work, Madeline's father, Seth, received a call about the NeoCare program. He signed up and the family was connected with Sarah, their NeoCoach.

“Suddenly we had another resource for information in addition to the doctors and nurses in the NICU, who often have limited time. If we didn't understand something, or forgot a question, we could run it by Sarah to explain to us,” Seth explained.

After two and half weeks, Madeline was discharged from the NICU and Jacquelene and Seth faced a daunting challenge, with Sarah at their side. “Bringing home a premature baby as a new mom is very scary,” said Jacquelene. “I wasn't confident that we would be OK without all of the machines and devices. But with NeoCare, I felt like I had someone to talk to, who could answer my questions. The program was my security blanket.”

At home, Madeline would often choke during feedings, which frightened Jacquelene and Seth. Sarah suggested that the problem could be acid reflux, and recommended that the family see a specialist. The specialist diagnosed Madeline's reflux and provided counsel to help her have easier feedings. When Madeline went through growth spurts, Sarah coached Jacquelene through the marathon feeding sessions. Sarah frequently sends the family articles and information about premature infants, is available both on the phone and via the app's chat feature to answer questions, and offers the parents guidance on important developmental milestones.

“She gives us information on things that we might not even know to ask about,” said Seth. “It's great just having an advocate.”

When Kim went into labor during her baby shower at only 26 weeks pregnant, she knew she'd have a long road ahead. After being transported to a hospital with a level 3 NICU, she was put on bed rest and eventually delivered twins, Lucas and Joshua, at 33 weeks.

“Both twins immediately went to the NICU, and my husband and I were basically at the mercy of the doctors and nurses,” said Kim. “It's not the situation where you take your baby home after a day in the hospital.”

The NICU team worked tirelessly, but Lucas unfortunately passed away from an infection. Once Kim and her husband Daniel returned home with Joshua, they were understandably fearful.

“Coming home felt like a huge triumph for us, but we were still very worried,” Kim explained. “At the hospital we had nonstop support. At home, our friends had to return to their normal lives. Our family lives an hour away. We're first-time parents, and it did feel a little isolating.”

Kim and Daniel heard about NeoCare and enrolled.

“It was so helpful to have a program that felt like it was designed for what we were going through, and to know that there's someone with medical experience to talk to and check in with us. It felt like an intervention,” said Kim.

As Kim and Daniel adjusted to life with Joshua, NeoCare fit seamlessly with their busy routine. “I was interested in NeoCare because I wanted to provide the best care for Joshua, and it was great to have information from people who had been through this before. We could use the program as we needed it, to track weight progress, and to use the journal to take notes and record how we were feeling or how the day went. I still talk to our coaches, Renee and Jessica. Overall it has been very comforting. It's a wonderful resource.”

Healthagen is leading the transformation to a simpler, more affordable health care system. Through population health, clinical care management and value-based care expertise, we help providers improve quality and value. www.healthagen.com.

About the Author

Dr. Jeffrey Jacques is President and Founder of NeoCare Solutions, a Healthagen business designed to help parents become confident, expert caregivers while their child is in the NICU and back at home. Previously Dr. Jacques was Chief Medical Officer for Healthagen, where he was responsible for clinical strategy, business development and clinical consultative services.