Developmental Considerations for the Neonate: In the Hospital and Preparing for Home

Background

The term ‘developmental disability’ is a term that is often one of the first questions a parent asks once they are beyond the critical survival period in the Neonatal ICU (NICU).  It is also often a question that we cannot answer absolutely.  We do know that numerous preterm and full-term survivors of the NICU encounter a range of disabilities, including cerebral palsy, sensory deficits, and learning disabilities.  Preterm infants are at a higher risk for language, cognitive, sensory, and motor impairments that can result in poor academic performance, behavioral issues, and adversely affect the socioeconomic status of the family.  Thus, current neonatal interventions must prioritize neurodevelopmental care.

The knowledge and understanding of the development of the neonate has progressed and grown extensively in the past 20-30 years.  This is a result of the advances in technology and health care.  What we know now is that “All care is brain care’, coined by Dr. H. Als in 1981.  While the basic physical body functions of the fetus develop early in gestation, most of the brain development occurs in those last 16-20 weeks.  This brain development includes not just language and learning, but also sensorimotor and socio-emotional systems.  These systems are connected and integrated during development.  

The NICU environment

When a preterm infant is admitted to the NICU, there are a variety of barriers to healthy neurodevelopment.  Much of the environment and care needed to support brain development is altered by a NICU admission.  Audio stimulation related to medical equipment, and tests and diagnostics (i.e. lab work, X-rays) can lead to adverse effects. The exposure to these stressors disrupts the critical periods of development.

However, major efforts and programs have focused on changing the NICU environment over the years.  Although the environment has not been optimized in most care settings, many interventions have been implemented to help reduce harmful stimuli.  These interventions include minimizing noise, cycled lighting, therapeutic touch, positive oral stimulation via breast milk swabs (i.e. oral immunotherapy), avoidance of strong scents, and clustered care to allow sleep.

Engagement of Families and Preparing for Home

To support these interventions, it is vital to empower parents during the NICU stay to take an active role in parenting their infant and cultivating routines and rituals.  This engagement with families facilitates the transition to home and supports ongoing healthy patterns for the NICU graduate.   To be quite honest, parents don’t know what they don’t know.  Engaging them early on in a NICU admission will help them learn and care for their baby by understanding their infants’ behaviors and needs better.  All families should have the opportunity to learn and provide an ideal environment for their child.   

The role of the family in the life of their hospitalized infant is irreplaceable and can have lifelong physiological and psychological effects.  As babies get older and closer to going home, we need to continue to teach parents about how developmental care applies in the NICU and in the home.  Positive developmental interventions provided by both the neonates care team and their parents can significantly improve outcomes. 

Even with vast improvements in technology and clinical practice, predicting developmental outcomes remains a difficult task.  Infants who experience a major insult during the newborn period may survive with an intact nervous system and infants who appear free from risk have developmental delays.  

Medical and developmental follow up is essential in the ongoing care of these babies. These services are provided by primary care pediatricians and specialty Infant Neurodevelopmental Clinics. 

That being stated, it is imperative the NICU care team inform families of the importance of these follow-up services prior to discharge.  Families should also be provided with an awareness of their baby’s strengths and needs, as this will give them a foundation from which they can build upon.  They see their baby as just that, their baby, and do not think of their challenges as a disability but just that, a challenge.   While the baby’s challenges eventually place them under the umbrella of ‘developmental disability’, the families are able to experience the joyful moments of parenthood but also be able to deal with the hardships.  

There is no one way that a specific developmental disability can affect one baby to the next because everyone is different. We have learned however, that with the provision of early-on education and hands-on teaching in the NICU, the trajectory for optimal developmental outcomes has been set in motion.  

 I am happy to say that I’ve seen many parents return to the NICU  for an annual ‘graduate’ party.  They share how wonderful their babies are, and do not focus on what the problems are.  This speaks volumes about how a ‘disability’ is not a negative thing but part of that individual and who s/he is.

Kathleen (Kadi) Martin RN, BSN, MSEd.  has been a lead clinical nurse/developmental specialist for 37 years and is dedicated to providing compassionate care in the Johns Hopkins Hospital NICU.  She also has provided outpatient developmental support in the Baltimore metropolitan area through the Maryland Infant and Toddlers Program