Parents Whose Baby Died Give Other Families a 24/7 View of Their Newborns in Plano NICU

Plano, TX -- Leighton Skaggs spent her entire short life in the neonatal intensive care unit at a Plano hospital.

Many of the people who loved her never had the chance to meet her.

In their grief, Leighton’s parents, Chris and Amy Skaggs of Celina, knew they wanted to do something to create a lasting legacy for their daughter, who was born premature and died three weeks later after developing an infection.

“We didn’t know exactly what, but we knew it would be something big,” Amy Skaggs said.

In the middle of the night, months after her daughter’s death, Skaggs had her “aha” moment, she said.

She felt a sudden urge to turn on the video baby monitor just to see her son, Jaxon, Leighton’s twin, who came home after 74 days in the neonatal unit at Texas Health Presbyterian Hospital Plano.

“I wanted to see him without waking him up,” she said. “And then I thought, ‘Why couldn’t we have had this while we were [in the hospital]?’ I was awake the rest of the night so excited about what we could do.”

The Skaggses were determined to put a camera system in the Plano hospital’s NICU so other parents could see their babies when they couldn’t be there.

And because infection protections restrict who can visit the NICU, the cameras would also give other relatives a way to meet their newest family members.

The plan became their own kind of therapy.

In 2013, two years after Leighton’s death, the Skaggses established Leighton’s Gift, a nonprofit to raise money to install cameras in the NICU. They started working withAngelEye, a camera system company based in Arkansas, and by October of that year they had installed 10 cameras. That number is up to 19.

Now the family is working to get one camera for all 45 NICU beds at the Plano hospital. On Saturday, they are hosting the fourth annual Leighton’s Ride, a motorcycle ride in Celina, to raise money to pay for the remaining cameras.

The Skaggses have already raised about $15,000 in corporate sponsorships this year.

“It’s unbelievable and humbling at the same time,” Amy Skaggs said. “The first year, we didn’t really know what we were doing.”

An average camera costs about $2,500, said Holly Barnhart, manager of business development at AngelEye. The cameras are paid for entirely through fundraisers.

“Leighton’s legacy has definitely continued. It’s an amazing thing they have done for her,” Barnhart said.

The camera system was developed in 2006 at the University of Arkansas for Medical Sciences. In 2013, AngelEye was created and began partnering with hospitals across the country.

AngelEye now works with 19 hospitals, including Texas Health Dallas, Fort Worth and Denton, and also is installing a system this month at a hospital in Dublin, Ireland.

The cameras, which are currently attached to incubators, look like light fixtures and are positioned directly over the babies. In addition to the live-stream video, an optional one-way audio component allows families to speak to their babies.

Michelle Kelly, clinical nurse manager for the NICU at Texas Health Plano, said Leighton’s Gift has been a blessing for parents who worry about being away from their children.

“Families feel like they have to be here all the time, but with having the camera they are able to step away from the unit and de-stress a little, but still be able to log in and see their baby on the camera and feel as though they are with their baby,” Kelly said.

She said the cameras have allowed families out of the state or country — even some fathers deployed overseas — to meet their newest family members.

The Skaggses, AngelEye and the hospital all said the feedback from other families has been incredible.

Amy Skaggs said she met a woman through Facebook who had posted a photo of what looked like a screenshot of her premature daughter.

She sent the woman a message offering her support and heard back that the woman’s daughter had been taken to the NICU at Texas Health Plano and that the family had had the chance to use the cameras.

“She didn’t get to see her baby for four days, but she got to watch her baby for those four days,” she said. “Her baby only lived nine days. That camera was her lifeline for her baby.”

Chris Skaggs said the cameras are helpful for all those moments when parents can’t be there, like the first bottle or bath.

“As a NICU parent, you are robbed of a lot of the firsts because you are relying on nurses and doctors to provide the care for your baby,” he said. “It’s for all those firsts that NICU parents don’t get to experience like normal parents.”

The Skaggses said their work isn’t finished, even after they get Texas Health Plano equipped with all 45 cameras.

“Beyond this, there is always something extra we can do,” Amy Skaggs said. “We don’t know what it is — we will have our ‘aha’ moment at some point.”

As for Leighton’s twin brother, he’s a healthy almost 5-year-old and “the best big brother” to 2-year-old Olivia.

But ask Jaxon about his sister and he’ll tell you he has two.

“He will tell you, ‘One is in heaven and she is an angel, and one day when I get old, I get to be an angel and I get to see her again,’” Amy Skaggs said.

How to donate: http://leightonsgift.com/donate/