In his years as a neonatologist, Vincent C. Smith, MD, MPH, has found anecdotally and in his research that the clinician managing a family’s discharge from neonatal intensive care units (NICU) disproportionately impacts patient outcomes.

Smith, the division chief of newborn medicine at Boston Medical Center, led a study examining how families are prepared for discharge and found significant variability in outcomes. Families with a primary nurse invested in their transition home after NICU discharge fared better. “It wasn’t about gestational age, length of stay or medical complexity. That discharge clinician sets the course,” he says.

Smith wasn’t alone in his findings.

Clinicians across disciplines working with NICU families, as well as parents, find that whether families are ready for the dramatic adjustment of going from a team of clinical support to being on their own is usually left to chance.

Erika Goyer, parent liaison and communications director of National Perinatal Association (NPA), says, “Medical care is siloed. You have a high-risk pregnancy with one team. Once your baby is born and needs intensive care, they’re transferred to the NICU, and you move on to another team. As your baby progresses, you’re supposed to move on to a team at home. What that team comes down to at home is usually just you.”

An estimated 9-13% of newborns in the U.S. require neonatal intensive care for complex medical needs, a number that’s increasing.

To support these families, a cohort of multidisciplinary clinical leaders – including Feeding Matters – and parents came together to standardize NICU discharge. Their hope with the NICU guidelines is to improve families’ experience, reduce stress and help NICU babies access the follow-up care they need to thrive.

Why NICU families need more support

If you speak to NICU families after their first night home, says Smith, what’s true for all of them is that none slept comfortably. Even in the best circumstances, there tends to be a lack of continuity for families. “A lot of families feel abandoned by the NICU. They get their papers and their baby, and they’re joyous. Then they go from bells, whistles and lights, with 50 people around to just them and a baby. And they just had to make do.”

Kristy Love, executive director of NPA and NICU patient advocate, knows firsthand what it’s like to have a child in the NICU. Both of her children were NICU babies. She spent as long as three months in the hospital with one of her kids. What she’s found in her years supporting other parents is that not much has changed since she struggled to transition home with her preemie over 20 years ago. Parents still contact her as much as a year after leaving the NICU to share their struggles. “We have all this support in the NICU during our journey, and then once we go home we’re flying solo,” she says.

She shared her concerns with Smith at a board meeting for the National Perinatal Association, and from there, the NICU discharge guidelines were born.

NICU discharge guidelines explained

The National Perinatal Association spent a year looking at NICU discharge factors like research, protocols, insurance benefits and parents’ experience. The National Perinatal Association looked at NICU discharge factors like research, protocols, insurance benefits and parents’ experience. They worked together with a group of multidisciplinary experts, including Cuyler Romeo MOT, OTR/L, SCFES, IBCLC, director of strategic initiatives at Feeding Matters. Together the content experts finalized the NICU guidelines and submitted them to the Journal of Parentology for peer review.

The guidelines address topics like:

• Basic information
• Anticipatory guidance
• Family and home needs assessment
• Transfer and coordination of care
• Other important considerations

Smith says there are around 300 guidelines, and no one expects NICUs to adopt all of them at the same time. The hope is that hospital neonatal teams will identify a few of the guidelines particular to their organization and population and then build from there. Over time, they can gradually implement all of the guidelines.

“Many people get overwhelmed when they see the challenges before them because they don’t necessarily have the team, resources or funding. I find everybody can make small changes leading to bigger changes,” says Smith.

Having peer-reviewed guidelines is an important step to improve all families’ experiences. Organizations like the American Academy of Pediatrics and others recommend that hospitals have a transition plan, but it was never formalized until now. “Everybody said you needed to have a plan in place to execute, but they weren’t given any guidance on it,” says Goyer.

Pilot program to put NICU guidelines into practice

Having NICU discharge guidelines is an important first step. Putting it into practice in the field is essential. When the team who wrote the guidelines looked for a NICU as a pilot program for implementing them, they chose Banner-University Medical Center Tucson.

Romeo, who served on the guidelines committee, is a clinician there. Plus, a local community partner, Smooth Way Home, helps families transition home from the NICU.

In January 2022, Romeo says they launched the pilot program by identifying barriers to a smooth transition home. Through crowdsourcing in the unit and close collaboration with the developmental RNs, Nancy Gates and Ashley Lee, they chose three areas of focus:

• Processes: Discharge processes and coordination
• Providers: Community provider readiness to accept infants into community-based care
• Parents: Parent and caregiver education and advocacy to support optimal care and development at home

The team found that families may not receive developmental care support once they were discharged home. It was unclear if families referred to the Arizona Early Intervention Program (AzIEP) were receiving care. Not all children discharged from the NICU qualify for early intervention services despite their difficult beginnings. If they did qualify, getting that first appointment proved challenging. “Before piloting the guidelines, our NICU team would refer families to AzIEP and then have no way to know if they received care,” says Romeo.

A long standing barrier to accessing services after discharge was knowledge sharing. Nancy and Ashley reported that early intervention agencies often were unable to access the infants’ medical records. Without this information it was difficult for families to qualify for service.

To address these issues, says Romeo, the developmental RNs are leading the way in investigating process improvements for information transition while working closely with Smooth Way Home as a liaison for a warm handoff into the EI system.

It’s a multi-year pilot program that we hope will grow into a larger program if we are able to secure funding. Our families deserve to be well prepared so they can finally enjoy their baby at home.

Romeo says the guidelines lead to better outcomes, but funding remains the most significant barrier. “This work is done while the clinicians continue to fulfill their typical job demands. Nancy and Ashley do not have time allocated for this project, but they feel it is vital to the infant’s health and development so the work continues.” Everyone involved says improving the continuum of care for NICU babies and their families requires tremendous work. But every level of improvement matters to the families who benefit from it. As Goyer says, “This is all about making sure families aren’t alone and have the support and skills they need from the clinicians and community around them.”

Visit NICU to Home for more information about the NICU guidelines.   Feeding Matters has been a strategic partner in creating and implementing the guidelines, together with NPA. For more information about how we help families of children with pediatric feeding disorder, click here.