NICU Aftercare - What happens after you leave the NICU? Pediatric therapies for NICU graduates often a critical component of care

When baby leaves the NICU – A NICU After Care Program

The 12 month old who wasn’t eating solid foods.

The 18 month old who wasn’t walking and didn’t know how to play with toys.

The 2½ year old who wasn’t talking.

The 3 year old who couldn’t follow directions.

 

brenda-with-triplets1Toddlers and young children like this were filling up TMC Pediatric Outpatient Therapist Brenda Abbey’s schedule. Something with their development wasn’t quite right. Their parents were concerned. These children needed help.

Like she does with all new patients, Abbey started reviewing their medical histories and was stunned when she found a common thread: Many of these kids were either born premature or spent time in the newborn intensive care unit.

“It was happening too often,” she said. “I thought to myself, ‘What is falling apart for this population? How can we catch these developmental problems sooner rather than later so that these kids don’t need therapy?’ There had to be something better than the ‘wait and see’ approach.”

Abbey started digging. She looked closer at the records of children who spent time in the NICU – at TMC, as well as other hospitals in Southern Arizona. She reached out to her counterparts in occupational and physical therapy – how many children were they currently helping who had also been born premature or were NICU graduates?

The connection she found – was alarming.

Abbey, along with TMC Developmental Nurse Specialist Julie Seidl, knew what had to be done. Using their combined 46 years of experience, they created the NICU After Care Program. The pair works together to identify babies who are about to be discharged from the NICU and who qualify for the program. These included babies who are having a hard time feeding or had been drug exposed, as well as babies born before 35 weeks gestation. “Research shows that babies born before 35 weeks gestation are at a higher risk for having language and cognition delays later in life,” Abbey explained.

“Our program is essentially developmental follow-up,” said Seidl. “It’s not a new concept, but historically it’s been an expensive model.” Seidl cited a similar program that lost state funding a number of years ago.

“This tracking is so important, and we didn’t want any family to shy away from receiving this help because they couldn’t afford it. We knew that if we could offer this program to families free of charge, it would help improve the outcomes for these children,” explained Abbey.

The two turned to the TMC Foundation and Children’s Miracle Network for support.

“When Brenda and Julie approached the TMC Foundation about funding this program, their research painted a picture of a serious need for this population. We believe this will be a pivotal program for the development of these children,” said Erika Grasse, TMC Children’s Miracle Network Director. “We applaud the efforts of these therapists, and all TMC staff who are able to identify problems or trends when it comes to our patients, and then offer a solution. We felt compelled to do what we could to help these therapists, in turn, help these children and their families. It’s the right thing to do, and we couldn’t have funded the NICU After Care program without CMN dollars. ”

The voluntary program requires the baby to return to TMC about two weeks after discharge. Abbey and Seidl will examine the infant’s feeding and do a developmental screening. Behaviors and tendencies that may seem like “no big deal” to mom and dad can signal red flags for the child’s speech, hearing or gross motor development.

“We are able to identify problems in children this young. If the child prefers to move their head to one side, for example, we’re able to diagnose torticollis, a stiff neck that results from a child having a side preference. We’re also able to tell if a baby’s head is becoming misshapen. If we are able to catch these things early and educate the parents, we may be able to get that child on a preventative track as opposed to waiting until they’re a toddler when the problem becomes much more prevalent, and the therapy track is much more complicated,” explained Seidl.

Parents are asked to bring the child back at 4-6 months of age, at the first birthday, at 18 months and finally – around the second birthday.

Four to six months of age is a big transitional time for a child’s feeding, motor and developmental skills. “At that age, I can’t tell if a child is going to have a speech and language delay later in life – but research tells me they are at higher risk. So I want to see them,” said Abbey.

The 2-year mark is also an important milestone because, as Abbey explains, premature babies should have caught up with their age-matched peers by age 2. That’s when “the playing field is leveled.”

At each visit, the NICU After Care team emphasizes education. They teach these families what to look for and help them learn what certain behaviors mean. They’ll tell them what to expect in the coming weeks and what to do if they don’t see their child doing certain things.

The two started tracking the first babies as part of this program in November 2012. Already, they’ve seen their work – and their push for prevention – pay off. “We’ve had families who need to bring their babies in once a month because of the education they’ve received rather than having to bring their child in for therapy once or even twice a week when the child is older,” said Abbey.

In November 2014, the first babies turn 2 and the team will have hard data on how this program is making a difference. Until then, the NICU After Care Team will continue to advocate for these children, and serve as a lifeline for their parents.