WXXI Local Stories
11:09 am
Mon December 21, 2009

A Difficult Journey: From the NICU to Success in the Classroom

Rochester, NY – A student's well-being has a big impact on classroom success, no matter where that student goes to school. But public health problems in Rochester City schools are so widespread, the district is finding it very difficult to teach a large percentage of its students. More and more resources are being devoted to non-academic interventions.

One significant challenge started on "day one" for one out of every five children in the district. They were born into the neonatal intensive care unit -- they're known as NICU grads and these children face enormous hurdles when they eventually go to school.

"She was 530 grams when she was born she's not quite doubled her birth rate. She weighs 990," Golisano Children's Hospital nurse manager Jean Livingston describes a baby that weighs just over two pounds.

Despite the wires and tubes attached to her, the child is dressed in a pink onesie, and the small plastic dome around her bed is covered with a pastel quilt. In the neonatal intensive care unit, extraordinary measures are taken every day to help babies breathe and grow -- so it's surprising how much the NICU looks like a normal nursery.

But life after the NICU is very often not normal. NICU grads are at an increased risk for disability later in life. And that can make it tough when they get to school.

"Delayed in speech, the cognitive delays, they're not able to process things as fast and they may also have ADHD type of symptoms," says Dr. LeKeyah Quinn. "[They have] difficulty sitting in a classroom for an extended period of time, difficulty sleeping at night."

Dr. Quinn is a pediatric resident at the University of Rochester Medical Center. She says the NICU grads she sees in her clinic need intervention early on to succeed in school. "It becomes an unlevel playing field compared to their counterparts that were full term. They may not be able to read as well, they may not be able to articulate as well and then they feel that they're behind compared to the rest of their classmates, and then they tend to dislike school [and that could set them up for] future failure through middle school and high school."

Nancy Bernier is the mother of a NICU grad, and she says what Dr. Quinn describes is exactly what happened to her daughter Leanna, "It was chipping away with her self esteem. Crying when she gets off the bus...it breaks your heart." Despite being on a ventilator and a feeding tube at birth, Leanna was reaching developmental milestones at the same pace as her peers by age three.

Nancy thought they were off the hook, and that Leanna would be just like any other kid, "When you got to a point where it wasn't just colors and letters and it was cognitive stuff and it was apparent that she was born really early and was going to have a few little learning challenges."

Nancy Bernier might not sound like a normal mom, and that's because she's not - she's also a nurse in the NICU. That's where she met, and went on to adopt, Leanna.

Not every parent is a NICU nurse, but there are lots of resources available for them. The state helps pay for care for low-income families in clinics like Dr. Quinn's. There are referrals for specialists and intensive therapy. But getting those resources can be like a second - or third - job. Nancy calls all the phone calls and badgering for appointments "barking."

"If you aren't barking, you're not getting seen," Bernier says. "And there are so many kids that need to be seen and so many kids that need services, that if you're not constantly in somebody's face, you're not gonna get the services."

And the problem is that a lot of parents can't always be barking. They might not have the money, or the education necessary to advocate for their kids. Dr. Quinn says there are lots of reasons that parents don't follow through to get help, "Referrals are not being made. Why are they not being made? Maybe the families are not coming in for well child visits, so they're not linked up with their pediatrician. Another reason may be that the families don't see that this is a deficit, this may be their first child and they don't have another child around to compare developmental milestones to."

And paradoxically some kids' problems aren't bad enough to require help. Nancy Bernier says her daughter Leanna wasn't making trouble in school, and she wasn't struggling as much academically as some of her classmates, so the school system was reluctant to label her as having a learning disability. Bernier ultimately got Leanna into a charter school, and that, coupled with tutoring, has helped her actually get ahead of her peers in her toughest subject: math.

Back at the NICU, Nurse Jean Livingston says the little 2 pound baby dressed in pink has a good chance of being pretty normal by the time she's 2 or 3, "These parents are invested and this kid will be the best she can possibly be."

But Livingston says a lot of kids that pass through the NICU aren't born into "picture perfect families." Some have little money, or no car, or low English skills. So doing everything possible to help their NICU grads succeed can be daunting - if not downright impossible.

WXXI intern Kate O'Connell provided production assistance for this story.