Special Interest Group Update
In each issue, one of NANN's special interest groups shares information in their area of focus.
Considerations for the Discharge of Medically Complex and Technology-Dependent Infants
Tosha Harris, APRN DNP NNP-BC
Baby W is a male infant born at 30 2/7 weeks gestation to a 26-year-old gravida 1, para 1, (G1P1) mother who received good prenatal care. Maternal prenatal labs were all negative, but Group B Streptococcus (GBS) status was unknown. The pregnancy was complicated by polyhydramnios and fetal tracheoesophageal fistula (TEF). The mother presented with preterm premature rupture of membranes (PPROM) and was in preterm labor; she received one dose of betamethasone 4 hours prior to delivery.
Infant delivery was via spontaneous vaginal delivery, and Baby W had Apgar scores of 7 and 8. He required supplemental oxygen via an oxygen hood following delivery, and a Replogle tube was placed for abdominal decompression. The infant was intubated and given CUROSURF® (poractant alfa) due to increased oxygen requirements before transport to a referral facility for pediatric surgery evaluation and intervention.
Baby W. is his parents’ first child. His parents usually visit after work hours. The father works out of town, but the mother’s work schedule seems more flexible for visitation, care conferences, and discharge training. Though the parents have an extended family support system, their relatives don’t reside locally.
Multiple chronic conditions have complicated the infant’s clinical course. Dandy-Walker syndrome has resulted in hydrocephalus, requiring placement of a ventricular access device (VAD) and a ventriculoperitoneal shunt. The distal tracheoesophageal fistula was repaired on day of life four, and a gastronomy tube (GT) was placed for nutritional support.
A type 3 laryngeal cleft and severe tracheomalacia led to tracheostomy placement. Palliative treatment of the long-gap esophageal atresia included reconstruction of the distal esophageal pouch and the placement of internal traction sutures for stage lengthening until anastomosis could be performed. Following one lengthening procedure, Baby W developed a massive chylothorax which required surgical ligation of the thoracic duct and placement of a thoracotomy tube.
At 35 5/7 weeks corrected age, Baby W developed Bell stage IIIB necrotizing enterocolitis (NEC) with pneumoperitoneum. Palliative treatment included ostomy creation and eventual reanastomosis. Due to the severity of the NEC episode, Baby W’s ileocecal valve had to be removed, and he has short bowel syndrome. Bronchopulmonary dysplasia (BPD) and pulmonary hypertension developed during the infant’s hospitalization. Gastric acid leakage from the GT site has resulted in several GT size upgrades and erosion around the GT site. GT issues, gastric dysmotility/feeding intolerance, oral aversion, and poor weight gain led to the placement of a Broviac® central line for parenteral nutrition supplementation.
Baby W’s clinical course has progressed to discharge. Parental involvement has been encouraged and supported throughout his hospitalization.
The discharge process of an infant with special needs or dependence on technology requires a multidisciplinary approach. Open and ongoing communication between all participants involved in the process is critical to the process and, more importantly, to the family’s success following discharge. Postponing caregiver involvement for a medically complex infant until closer to the time of discharge can increase anxiety and potentially delay discharge. Caregivers should be educated regarding all procedures and infant-related milestones required as a discharge condition.
A search of the literature produces multiple studies that support the idea that developmental delays are inversely related to gestational age. Prematurity is a significant risk factor for developmental delays. Additionally, Baby W’s complex medical history increases the likelihood of being developmentally delayed. He is at high risk for respiratory infections due to his chronic lung disease and tracheostomy. As a sequela of BPD, the development of asthma-like symptoms can occur during childhood. The infant’s prolonged hospitalization is another risk factor for developmental delays. Chronic hospitalization, medical-device dependence, and frequent readmissions can put the infant at risk for delayed motor and cognitive/psychosocial growth due to sensory overexposure, decreased social interaction, and missed opportunities to practice gross and fine motor skills.
Parents and caregivers should be educated so that they clearly understand their neonate’s underlying medical condition, and they should be able to convey important information about the infant to other family members, medical personnel, and secondary caregivers. According to the American Academy of Pediatrics Committee on Fetus and Newborn (2008), parents and caregivers should receive education and demonstrate their understanding of the following nine essential care fundamentals: Parents and caregivers should be educated so that they clearly understand their neonate’s underlying medical condition, and they should be able to convey important information about the infant to other family members, medical personnel, and secondary caregivers. According to the American Academy of Pediatrics Committee on Fetus and Newborn (2008), parents and caregivers should receive education and demonstrate their understanding of the following nine essential care fundamentals:
- basic infant care (e.g., bathing, temperature checks, comforting)
- special procedure technique (e.g., dressing changes, tracheostomy care, and suctioning)
- recognizing symptoms associated with the infant’s medical condition and those associated with illness
- general safety measures (e.g., positioning and car-seat use)
- specific safety measures related to equipment
- formula or milk preparation
- medication preparation, administration, and storage
- supportive equipment operation
- cardiopulmonary resuscitation (CPR).
A postdischarge appointment should be scheduled before discharge with a pediatrician who has experience managing medically complex neonates.
For parents, the NICU is a place of safety, care, and refuge, but it also represents feelings of vulnerability, anger, guilt, and uncertainty. Over weeks and months, parents watch as their fragile infant experiences difficulties. Finally, the day of discharge arrives, and happiness and joy can turn to panic, anxiety, and doubt. After this day, the monitors that alert to problems are gone. Gone is the reassuring support the NICU nurse provides, and gone is the sense of security. Unfortunately, for many parents of NICU graduates, postdischarge support is minimal or not available at all. Parents are often left to find their way through the maze that is postdischarge life.
Ideally, the first weeks of the postdischarge NICU care plan should focus on parents/caregivers becoming comfortable with the home environment, which is less structured than the NICU, and on ensuring that parents/caregivers are not overwhelmed. Parental depression and anxiety can lead to suboptimal infant care practices. Close contact with parents/caregivers postdischarge offers an opportunity for education reinforcement and ongoing psychological assessment. The identification signs of caregiver depression, anxiety, and stress may warrant a mental healthcare referral (Purdy et al., 2015).
Infants with special healthcare needs require close monitoring and frequent follow-up visits. According to Purdy et al. (2015), postdischarge infant growth is a positive indicator about the infant’s psychosocial environment and parent-infant relationship. A primary care provider (PCP) visit should be scheduled no more than 72 hours following discharge. Home visit programs are also effective for watching postdischarge wellbeing and reinforcing continuous education between PCP and subspecialty visits. Home-visit nurses can assess infant growth and development, consider parent-infant bonding issues, identify equipment needs and problems, assess parents’ mental health condition, and offer emotional support (Purdy et al., 2015).
Subspecialty appointments and referrals (e.g., early intervention, Special Supplemental Nutrition Program for Women, Infants, and Children [WIC]) are typical in the first weeks following discharge; appointment dates and times should be scheduled before discharge. A postdischarge care plan should be individualized and involve communication, identification, coordination, and referral of at-risk families to the proper services (Purdy et al., 2015). The NICU care team should use evidence-based guidelines and a collaborative approach for discharging patients and families from the NICU. The time and effort put forth before discharge can have significant payoffs—in terms of improved postdischarge patient outcomes—in the weeks, months, and years following discharge.
American Academy of Pediatrics Committee on Fetus and Newborn. (2008). Hospital discharge of the high-risk neonate. Pediatrics, 122(5), 1119–1126. https://doi.org/10.1542/peds.2008-2174
Purdy, I. B., Craig, J. W., & Zeanah, P. (2015). NICU discharge planning and beyond: Recommendations for parent psychosocial support. Journal of Perinatology, 35(Suppl. 1), S24–S28. https://doi.org/10.1038/jp.2015.146