Perhaps, if he had been more confident in what was going on — if he could have made better sense of the swirl of data that engulfs a NICU parent — he would have pushed harder on his concern, Phil Martie says.
Just over 20 days into her stay in a community hospital NICU, Martie’s daughter Nicolette London’s stomach looked different to her parents: a subtle change in shape. Martie and his wife raised their concerns, and were told it was fine.
After moving to the NICU at Children’s Health of Orange County (CHOC), outside Los Angeles, Martie learned that everything was not fine. Nicolette had an intestinal perforation.
In the time between when Martie noticed the change and Nicolette went into the operating room, the condition had progressed. In surgery, the surgeons discovered her intestines and organs were stuck together because of how long the perforation had lasted. She was on the table for hours.
“She died in surgery,” Martie says.
It was a moment where, armed with more confidence and competence, Martie would have pushed harder, would have gone to CHOC sooner — would have perhaps been able to save her life.
His daughter’s name now adorns Martie’s effort to empower NICU parents: a healthtech company named Nicolette.
NicoBoard empowers NICU parents.
The startup has designed its first product to help parents make sense of what is going on with their children — at a time of maximum stress and fear — and become effective members of their baby’s care team.
It is an app called NicoBoard.
The tablet-based application is designed to streamline and demystify the flurry of medical numbers being thrown at parents, provide curated and accurate medical education resources, and give them a place to chronicle their time in the NICU.
Martie came from the world of business process outsourcing: taking on tasks for companies and performing them better. Customers, he knew, could be given tools to enhance their chance of success. Where was the equivalent in the NICU?
“I’m used to being a problem solver, getting things done, taking charge,” Martie says, used to having the confidence to contribute. But in the NICU, he found he had nothing. “I just felt helpless for the first time.”
That feeling inspired him to found Nicolette, along with M.D. Michel Mikhael and Seth Brickman.
Martie’s helplessness is a common experience of NICU parents. Parents already afraid for their babies — and perhaps traumatized by an unexpected premature delivery — have a tremendous amount of information thrown at them that they need to try and understand, says Craig Garfield, a neonatal hospitalist at Northwestern, who is not affiliated with NicoBoard.
They have a desire to help their children but cannot.
“It can be very scary for them,” says Garfield, who has been exploring how technology can help families in the NICU for several years. With colleagues, Garfield created Smart NICU2HOME, a phone app also designed to aid NICU parents, which has been rolled out at three more Chicagoland NICUs.
To help parents manage these feelings of fear, confusion, and helplessness, NicoBoard collects and interprets the torrent of information in a patient’s electronic medical record.
Metrics like body temperature, weight gain, and oxygen saturation are pulled from the record and translated by a kind of AI, called natural language generation, into simple, easy to understand sentences that can help parents feel confident when making decisions or participating in care.
These are bolstered by visual aids like graphs and charts. Rather than staring passively at monitors, NicoBoard can present information in a more actively engaging way, condensing it into simple visuals that can also be interactive.
In combination with educational resources curated by medical professionals — there’s both too much info online, and not enough good info, Martie says — this allows parents to analyze and track progress, as well as help them gain an understanding to become active members of the care team.
“The NicoBoard helps give parents additional information to ask clarifying questions, get a fuller picture of their baby’s care, and enhance their partnership with the medical team,” Jennie Sierra, nursing director of the NICU at CHOC Hospital, says.
And hopefully, with that understanding comes confidence.
The app also has a platform for videos, photos, and journal entries, which can be shared with family and friends.
Martie likens it to a NICU Instagram.
“It helps add some normalcy back into being a parent, which otherwise is just stripped away” Martie says.
Made from love
Eventually, a routine was established: Wang and his wife would go to their babies in the NICU, pick them up, provide crucial skin-to-skin contact, and, as they were holding them, turn to NicoBoard to see the data.
“We have our quiet moments with our daughters in our arms, and we just want to know, how are they growing?” says Wang. “Because we see them everyday, we can’t really see the difference. But the numbers show you the difference.”
An emergency medical situation meant that Wang’s wife could not carry their children to term; the couple’s triplets were born just a few days into the third trimester, very premature. After a couple weeks, the family moved to CHOC, where their medical needs could be better met — and where families can now get tablets running NicoBoard.
Wang was introduced to NicoBoard a couple days after admission, but the tool was the last thing on his mind. The emotional tumult of their situation made using an iPad seem like the last thing he wanted to do.
“You just want to be around people” at first, Wang says. “[But] once you’re past that point, you start to collect yourself, you just want to know ‘what are my babies chances? Who am I going to bring home?’ And having the data in front of you, it helps, it gives you comfort.”
It also colored their grief, after one of their girls passed away — if we had checked NicoBoard more, could we have caught something?
“Ultimately, I think we would have lost her anyway,” Wang says. “But sometimes we wonder; maybe we could have looked at the data closer. We would’ve seen something, something turned, and we could have said something to the nurses about our girl.”
The definitions and educational resources helped Wang to better understand the terminology used by the NICU team, and to play a more active role. He compared the experience to playing for a foreign basketball team; you need some shared language to truly understand what’s going on, to ask the right questions.
And eventually, the journaling and sharing features of NicoBoard did its job. “When you’re ready for the joy, there’s tools in there that allow you to celebrate, to document those moments,” Wang says.
But before all that, it was Phil Martie’s story that caused Wang to first pick up the iPad.
“This product was made out of love,” Wang says. “This is Phil’s song to his daughter.”
This article was originally published by our sister website, Freethink.