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Beyond the NICU...

Updated: Jan 10, 2019

Parents play a tremendous role in the health and development of their babies, and this is never more true than for families who have experienced a stay in the Neonatal Intensive Care Unit (NICU). Infant development is impacted by a variety of factors and influences, including: personal (ex: gestational age when born or medical history), environmental (ex: caregiver support or physical surroundings), and occupational (ex: daily activities such as feeding, sleeping and care routines). These developmental factors look different for babies who start life requiring the support of a NICU environment.

The body systems of pre-term infants are still in development, and this development continues outside the womb, in an environment that is very different than the human body. Developmentally supportive care designed to protect these infants varies in every NICU, with specific practices and environment having a potentially positive or negative impact. A heightened level of medical intervention in every NICU is essential for supporting life, though these interventions often have secondary impacts on infant development. The good news is that a lot can be done in the NICU and beyond to buffer these effects.

Developmental Support at home

There can be a lot of uncertainty for families about what the future holds for their child and discharge from the NICU brings a mix of emotions as parents prepare to leave the protective bubble of the hospital and begin their lives at home. Many babies who have experienced a NICU stay could benefit from additional developmental consideration and attention once they go home, which is why they often qualify for Early Intervention (EI) services. EI is a state and federally funded program that provides free services to support development for children ages birth to three years. Sometimes EI adequately supports a child's developmental needs. Other times, a child may need more than this program provides. Seeking additional support from a specialist, such as a pediatric occupational therapist, can be helpful for providing direct intervention while partnering with parents to support their child's development.

The first few years are a critical time when brains grow and change more than any other time in life. The brain is “elastic,” meaning it has the ability to reorganize, repair, and grow with new experiences. Parents are instrumental in this early period, helping their baby adjust to the world outside the NICU to build a solid foundation early on from which to explore, play, learn and grow. If parents, who are the resident experts on their child, have concerns about development they should trust their instincts and seek support early, through the Early Intervention program and/or a developmental specialist.

When to seek help

Here are some potential indicators your baby may need extra support for their development. This is not a comprehensive list and many babies will demonstrate one or more of these characteristics over the course of their development. Trust your instincts and if any of the below indicators persist or if you have concerns based on behavior not listed, reach out for support.

  • Your baby spent an extended time in the NICU

  • Your child has been diagnosed with developmental disabilities, such as Down Syndrome, Spina Bifida, Cerebral Palsy brain injury, genetic syndrome or other condition impacting development

  • Your baby is slow to meet developmental milestones (after adjusting for prematurity) or skips certain milestones, such as crawling

  • Your baby has a noticeable one-sided head turning preference or visible head flattening

  • Baby experienced a brachial plexus injury or other birth trauma

  • Your baby struggles with feeding (bottle, breast or solid food)

  • Sleep is problematic for baby (getting to sleep or staying asleep)

  • Your baby dislikes "tummy time”

  • Baby seems to have low muscle tone or tires easily with physical activity, like feeding

  • Frequent crying or irritability with difficulty being consoled

  • Daily routines such as diaper changes, clothing changes, bathing and other care activities create intense reactions

  • Baby (older than 3 months adjusted age) makes minimal eye contact or shows little social engagement with family

  • Your child shows minimal interest in toys or play for age

  • Your child is "over-sensitive" or avoidant of sensory experiences, such as touch, movement, lights, sounds, tastes

Click here for more resources or guidance for seeking additional support

Learn More about Sarah Reppenhagen, OTR/L


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