A lack of NICU cameras spurs couple's fundraiser

Daniel and Tiffany Robinson at their home on 05/17/2021 for a HP Volunteer Story. (Arkansas Democrat-Gazette/Cary Jenkins)
Daniel and Tiffany Robinson at their home on 05/17/2021 for a HP Volunteer Story. (Arkansas Democrat-Gazette/Cary Jenkins)

Daniel "Nebby" Robinson is a bright, precocious 4-year-old with boundless energy who loves spending time with his family. The feeling is mutual; as the only child of Tiffany and Daniel Robinson of Little Rock, Nebby is the center of their universe and that of his extended family.

Like all good mothers, Tiffany never lets Nebby's adventures take him out of her sight for long, save for once, shortly after he was born six weeks early at Baptist Health hospital in Little Rock.

"We were caught off-guard pretty much by everything," she says. "He was born and we didn't get to hold him because he had to be checked out and everything. We finally got to see him at midnight that night. Then, the next day, one of the nurses at the hospital told us about these cameras they had on the babies. Anytime we wanted to we could log on and look at Nebby in his little bassinet in the NICU. That was really exciting.

"As Nebby got stronger, they would move him from one area of the NICU to the next, a step-up level they call them. When he would move from one level to the next level, he would get a new little bassinet, a new area and a new pod. I think the second or third step he moved up he didn't have a camera."

Over his three-week NICU stay, Nebby was outside the aim of a camera for just few days, but it felt like an eternity to his parents. The nagging memory of that panic-inducing lack of contact haunts Tiffany to this day.

"Daniel and I were still not even thinking straight; it was just a whirlwind of emotions," she says. "When they told us about these cameras and we're still at the hospital I thought, this is great. I had my iPad set up on the little tray table by my hospital bed. I can log on and see Nebby and it's super-cool and we love it.

"Then it's time to go home a couple days later and he doesn't get to go home. When they told me he's been moved to a step-up where there was no camera, I mean, my heart immediately sank. I just felt gut-punched. I wasn't able to be there with him and now I couldn't see him. I had kind of a mini meltdown."

Once Baby came home, the couple had a chance to process what they'd experienced. Well-connected within philanthropic and community service organizations in Little Rock, they wanted to help make a difference for the next family in the NICU, but weren't sure how. Besides that, they found their experience difficult to talk about.

It turned out the Baptist Health Foundation was struggling with the same concerns. A couple of years ago, the hospital began installing cameras by AngelEye, a company created by a group of UAMS physicians now operating offices in Little Rock and Nashville, Tenn. But not all beds could be viewed.

"We have a total of 65 NICU beds in Little Rock and when we acquired Sparks Hospital in Fort Smith, they also have a NICU," says Lena Moore, chief development officer with the Baptist Health Foundation.

The Foundation had funded the purchase and installation of the cameras it did have through events such as its Pins for Preemies bowling event and other efforts. Daniel, who has for several years sat on a fundraising subcommittee within the organization, had helped raise those funds. But the cause for cameras became obviously more personal after Nebby was born.

By 2020, the group wanted to push to finish the project, only to watch covid-19 derail all of its live fundraising activities. So, another strategy was conceived, one where the Robinsons would share their story through a video to a global audience in the hopes of raising the remaining money.

"I think all the stars kind of aligned to do it," Tiffany says. "We tried to do this a couple of years ago, closer to the time it happened, but it was really hard for me to talk about it. I was so, so emotional about the whole thing.

"They asked us this time and this time we said yes. I think the timing wasn't right then, but this time it was right."

As the video demonstrates, the difficulty of their ordeal was fresher than the couple may have bargained for, but the raw emotion was compelling. Posted in November, it kicked off a December fundraising appeal. Despite the short window, the holidays and disruption of the pandemic, the message hit home.

"People Daniel and I talked to would say, 'Oh my gosh, we saw that video. We're going to participate. We're going to donate. We want to do that,'" Tiffany says. "The feedback we got was so heartwarming."

"Daniel and Tiffany trusted us with one of the most important times of their life, and who wouldn't connect to a baby being born and a mother not being able to see them?" Moore says. "People connect with people over personal experiences."

In just one month, the effort helped to reach the goal of raising $95,000 to fund 20 cameras and cover every NICU bed in Little Rock and Fort Smith. Patient impact was immediate; Moore reported between January and April nearly 90,000 views had been logged by parents and family members via secure internet connections. Being able to see the direct positive impact of sharing their story is satisfying, Tiffany says.

"One of the things I learned after having done the video is that there are so many people out there who have premature babies for whom this wasn't an option," she says. "People came out of the woodwork to tell us their stories, because I guess the opportunity for them to talk about it hadn't come up yet.

"It's not like it was millions of dollars, but it was still a great sum of money and we completed it much quicker than anything else that we have been a part of. This is still so personal to us and I'm so proud of everybody who pitched in and participated. I really couldn't be happier; this is one of the happiest things that Daniel and I have done, for sure."

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