If your child spent time in the NICU, you most likely had the opportunity to work with an Occupational Therapist(OT). The OT plays a vital role with helping your baby’s sensory system and help him/her organize and regulate sensory stimulus around them. OT’s also assist families in fostering optimal development. This would include age appropriate activities, parent-child bonding, and sensorimotor processing. Teaching all of this is important in the NICU, especially once the baby is going to be transitioning to home and will most likely require further intervention to continue on in their development and achieving milestones. The OT can help establish flexible, realistic post-discharge plans with parents to have a healthy and positive transition to home and their community.
A key component for a child’s readiness for discharge from NICU is excellent parent support services. Parents need to be respected and valued as members of the team and team members should focus on parental strengths and parents being able to define what their needs are for their baby/babies, as well as, their priorities. Team members must remember that parents are viewed in the context of their families and communities and support services need to be accessible. Parents teach and learn and give and receive information that is crucial to an easy transition to home.
The stress parents feel while their baby is in the NICU can lead to feelings of isolation, sadness, fear, anxiety and depression. Those same feelings occur at home and studies have shown that these feelings tend to have an adverse effect on their parenting abilities. Fathers also can have emotional distress after returning to work and coming home to help with the mother, baby and other children. Factors that may increase parental stress at discharge is the degree of prematurity, length of stay in the NICU, diagnosis of apnea requiring a monitor for home use and feeding. Teaching of all types is crucial and this empowerment must begin in the NICU, followed by more post-natal, outpatient and community services. However, there may be gaps in services, especially Early Intervention or developmental needs of the premature infant with OT services (as well as PT or ST) , which could be four weeks to four months post NICU discharge.
Occupational Therapy can help in preparing the transition to home in many ways. OT’s are trained to assess the home environment and answer questions such as the type of home family lives in, the daily schedules for family members and how it impacts who can care for baby and at what time of day. How old is the home and does it need modifications completed to be safe before the baby leaves the NICU. The OT can work with other professionals in the community such as social services to make sure financial resources are available and other basic needs are present to help care for the infant. While in the NICU, the OT provides bedside teaching verbally, through handouts, videos and provide valuable consulting websites such as Early Developmental Therapy Consultants to enhance parent’s knowledge and confidence in caring for their baby once discharged home from NICU. Such teaching would include basic baby care (bathing), home environment readiness (provisions for special needs), infant behavior (normal vs .sick/pre-term infants), guidance plans (sleeping, soothing your baby, feeding, enriching environments) and family support. Let’s explore these concept in detail!
Basic Baby Care
This could be as basic as handwashing, bathing, dressing, swaddling and changing diapers to Safe Sleep practices. The risk for SIDS is 3-4 times higher among pre-term infants, so it is vital parents carryover safe sleep practices introduced through American Academy of Pediatrics. Kangaroo Care can be continued after discharge to home for parent bonding and maintaining baby’s body temperature. Additionally, under this category, signs of illness, home and car safety and visitation/outing questions can be answered.
Feeding is usually the main reason for babies to remain in the NICU. Something that is so automatic for most kids is not for our premature population. Many OT’s get feeding certifications and are feeding experts in the community. They can assess the baby’s respiratory status, gag reflex, suck-swallow-breathe pattern and assess infant behavioral cues. They will teach parents hunger cues, proper positioning to feed the baby, rooting and sucking reflexes, how much time it should take to feed a baby and the volume necessary for baby to consume per feeding. Most babies in the NICU have higher calorie formula being used at time of discharge, so the OT can help parents feel confident in mixing up formula. Most importantly, the OT can help parents to manage their infant’s evolving feeding process, nipple selection and seek community support for lactation if mom is breastfeeding. The OT again helps transition babies from liquid to a more solid food diet and some babies have an increased risk of behavioral feeding problems from prolonged tubing from ventilator support, taping near the oral area when baby was in the NICU.
Home Environment Readiness
The OT can provide parents with information on how or where to get access to provisions for special needs and be a great source for providing community resources depending on the family’s needs. A few OT’s do go on to get certified in- home modifications to help make the home as safe and accessible as much as possible.
Because a premature infants nervous system has developed differently in the NICU setting, an OT can discuss how normal newborns differ from premature infants and help parents to adapt and help foster their infant’s sensory system in the home environment. There are engagement cues to indicate the baby is coping well, while disengagement/stress cues signal to the parent the baby is overwhelmed by sensory input in their environment. The OT can help provide education to look for these cues and be able to positively respond to them.
Guidance Plans for Parents
OT’s have a great deal of schooling and knowledge to help parents learn what to expect when their babies grow especially when it relates to sensory systems. This would entail a baby’s sleeping (or lack thereof), fussiness and difficulty with soothing their baby, feeding, and adapting the home environment so it is enriching and helps achieve developmental milestones. They would be able to show them how to respond if their baby’s sensory system was overloaded, containing/swaddling the baby, hold the baby quietly with no other input until the baby’s cues determine when to engage again. The OT can show parents how to perform simple visual perceptual activities to get the eyes and head turning to full range of motion. Teaching infant massage to parents can be one of the most rewarding activities to do with their babies. Massage helps with calming the baby, improves blood circulation, aid in digestion, help mature the nervous system and put baby into a deeper level of sleep so they can put on weight and helps with brain maturation. One of the biggest challenges developmentally is tummy time. With the inception of Safe Sleep practices, many parents will not put their babies on their tummies causing many kids to become developmentally delayed. Babies need to be on their bellies everyday, but they must be awake, on a blanket away from animals, and supervised!
Additionally, the OT can steer parents towards their community resources such as Early Intervention (therapies/social work and in some state, mental health professionals), follow-up clinics for development as well as home visits by nursing, and on-line websites to help babies to achieve developmental milestones.
Lastly, the OT can start preparing parents to be their child’s #1 advocate. In the NICU, health professionals work as a team with parents to educate them about options parents have to care for their child. As your child develops, parents continuously advocate by continuing to look for sources and professionals to help when help is needed. Nobody knows their child like a parent does, so if something in your child’s development doesn’t seem right, ask questions, seek out professionals/experts and share observations with them. Persistence and Insistence are the greatest parenting skills needed for your child!
About Tracey Kondrasuk-Brander
Tracey Kondrasuk-Brander, MAOTR/L, LMT, NTMC now works PRN as a NICU Occupational Therapist at Wellspan Health. She is also an Early Intervention Occupational Therapist and Licensed Massage Therapist. Tracey has recently launched a new on-line consulting website, Early Developmental Therapy Consultants, to help parents of premature infants with questions about developmental concerns and to bridge the gap from NICU to transitioning home and starting programs in their community.