Learning Objectives
By the end of this section, you will be able to:
- Describe the process of discharge preparation for an infant at high risk
- Discuss education provided to caregivers preparing for discharge with a newborn at high risk
- Delineate the differences and additional needs of the high-risk infant who is discharged under hospice care
All new parents have concerns and anxieties as they prepare to take their newborn home. But these concerns are multiplied when the newborn is at high risk. All families caring for infants who are born premature or with a congenital and/or genetic disorder have an increased risk for family dysfunction. These families require education and training to care for their child at home (Puls et al., 2019). They may also require psychosocial and financial support to function at their best.
Discharge Planning
A high-risk infant is determined to be ready for discharge on the basis of their medical status. Considerations include the readiness of the family to take the infant home, what care the infant needs, and what can be logistically provided at home. In addition, the ongoing cost of the infant’s hospital stay must be considered (American Academy of Pediatrics Committee on Fetus and Newborn, 2008).
Medical readiness for discharge means that the infant is physiologically stable. This consists of the following:
- The infant demonstrates that they can maintain an axillary temperature between 36.5° C and 37.5° C without external warming.
- The infant maintains a mature respiratory pattern without episodes of apnea or bradycardia.
- The infant demonstrates mature oral feeding skills, allowing enough caloric intake for appropriate growth, with weight gain paralleling a normal growth curve.
- The infant has the ability to sleep in a flat, supine position.
Multiple routine screenings are completed before discharge. Some, like the newborn screen, are completed for every newborn within the first couple days of life; others are more specific to the high-risk infant. A hearing screen is performed using auditory brainstem responses for all discharging newborns. However, a follow-up hearing evaluation is scheduled between 1 and 3 months of age after discharge for the high-risk infant because of the increased risk for hearing loss (Smith & Stewart, 2021). A head ultrasound (HUS) or magnetic resonance imaging (MRI) of the head for follow-up from earlier findings may be required. Infants born at less than 30 weeks’ gestational age are at risk for developing retinopathy of prematurity (ROP). They will require routine ophthalmologic screening serially until their retinal vessels are mature and a pediatric ophthalmologic exam by 1 year of age (Smith & Stewart, 2021). Vaccinations are given prior to discharge, according to the Centers for Disease Control and Prevention’s (CDC) vaccination schedule.
Link to Learning
The Centers for Disease Control and Prevention (CDC) provides vaccination schedules for all ages.
All infants require a car seat for safe travel. For infants at risk for cardiorespiratory compromise, defined as apnea, bradycardia, or oxygen desaturation (Smith & Stewart, 2021), the nurse will observe the infant in their car seat prior to discharge. The observation lasts for 90 to 120 minutes or the length of their travel time home, whichever is longer. A failure of the car seat screening occurs if the infant drops their saturations for more than 10 seconds, has apnea greater than 20 seconds, or experiences bradycardia less than or equal to 80 beats per minute (Smith & Stewart, 2021).
Infants with Dependence on Technology
Some high-risk infants discharged to home will require gavage feedings, supplemental oxygen, mechanical ventilation, and continuous or nighttime cardiorespiratory monitoring. In gavage, medications and/or liquids, including formula or breast milk, are administered through a small tube placed through the nose or mouth to the stomach or small intestine. Parents and other caregivers require education about each piece of equipment, how to determine if it is working correctly, and what to do if it is not. It is recommended that two home caregivers receive all discharge education so that one person is not tackling this challenge alone. A case manager will connect a durable medical equipment (DME) company to the family early on to deliver necessary equipment to their home. Further, the home environment must be able to safely house the at-risk infant and should meet the following criteria:
- Working electricity that is compatible with the equipment needed for care
- Entryways wide enough to allow equipment, including the patient’s bed, to be delivered and moved if needed
- Local EMS informed of patient’s requirements and care needs (Smith & Stewart, 2021)
A high-risk infant who relies on gavage feedings requires a tube. A nasogastric (NG) tube or an orogastric (OG) tube is a feeding tube placed in the infant’s nostril or mouth down to their stomach. This is not a permanent device. When an infant is discharged home with gavage feeding, the NG or OG tube is cared for and replaced by the parent. Feeds—breast milk or formula—are then delivered directly to the stomach as bolus gavaged feeds 7 to 8 times a day. Even though this tube was placed by the nurse in the hospital, the care provider will be the person to determine if the tube is placed correctly, if the infant is receiving their feeds, and if the tube needs to be replaced. A gastric tube (G-tube) is a more stable tube for feedings and is placed surgically or via interventional radiology. The G-tube is used when the infant is likely to require gavage feeding for a lengthy period of time or the NG or OG tubes are not considered safe for home nutritional support (Figure 25.18). Some feeding tubes, such as a J-tube or NJ-tube, reach beyond the gastric sphincter to the duodenum or jejunum of the small intestine to provide continuous feeds when the infant cannot tolerate gastric feedings. These small-intestinal tubes are threaded through the G-tube and if dislodged require replacement in the hospital with imaging to confirm correct placement.
A high-risk infant may be discharged home with a tracheostomy in place and/or a ventilator to support their oxygenation and ventilation (Figure 25.19). Discharge parameters at each medical facility may differ slightly, but a minimum oxygen requirement is the goal. Typically, 40 percent FiO2 is the maximum for home-going purposes. The family will need to have a tracheostomy tube (trach) of the same size the infant has in place and one a size smaller available at the bedside. This is for replacement if the trach becomes dislodged or clogged.
Respiratory care equipment requires an inspection of the infant’s home prior to discharge. A respiratory therapist will evaluate the electrical outlets in the home, door opening size, and electrical panel location and capacity to ensure that the home is safe with the addition of oxygen and/or a ventilator (Smith & Stewart, 2021).
Parent Education
Before the high-risk infant can be discharged home, the home caregivers must demonstrate competency in all the care their newborn requires. Each task the home caregiver must complete before discharge is a point of education for the nurse. All home-going medications are listed and described, and administration is shown by the nurse prior to the caregiver completing the medication administration. The home feeding pump is set up by the nurse first, and then the caregiver does the same preparation under the watchful eyes of the nurse. Placement of the feeding tube, if required for feeding, is first done by the nurse, and then the caregiver is asked to demonstrate their comfort in placing the gavage tube, administering the feeding on a pump, and identifying if the tube has been dislodged. The care provider must be able to administer and store the infant's medications safely. They must verbalize that they can identify signs and symptoms of illness, that they know when to contact the primary care provider, and that they can recognize when urgent care is needed. Infant cardiopulmonary resuscitation (CPR) training instruction is provided to most caregivers of premature infants prior to discharge. Education surrounding all the infant’s care begins early during the admission and continues throughout the hospital stay with consistent and realistic, but hopeful, information. Tools to prepare the home caregiver may include checklists showing care successfully demonstrated, pictographs, visual aids, or recorded information. Inviting the family to participate in rounds, particularly prior to discharge, allows them to direct questions to the primary care team.
Families with limited English proficiency or immigrant families are at increased risk for difficulties in understanding discharge and home care instructions. Discharge instructions in their primary language are essential. Appropriately trained medical interpreters are utilized throughout the parent education and training process to decrease the risk of misunderstanding. Allowing home caregivers to practice care with direct supervision and return demonstration decreases chances for error at home (Smith & Stewart, 2021). This practice is particularly well done with rooming-in practices where the caregivers stay with the newborn for one or two nights prior to discharge, providing the maximum amount of care that they can as a practice run for home. This is not always an option at all facilities, depending on space and room availability, but it can be a helpful practice for new parents and an efficient way to complete and evaluate discharge teaching.
Cultural Context
Immigrant Families of High-Risk Newborns
Families who are immigrants to the United States, whether proficient in English or not, require culturally competent care along with discharge planning specific to their home life. “Cultural values, historical trends, parents' level of education, and the process of immigration blend in intricate ways to determine how immigrant parents in the United States enact the role of parenting” (Bradley et al., 2014). How the family tackles their child's health-care needs and what materials they need to assist their children in growing and developing is different for each family (McGowan et al., 2019).
A psychosocial assessment, an assessment to determine a family's mental health and social well-being, is performed by a social worker prior to discharge to identify and support any social or financial needs for the family. Families with high-risk infants are at higher risk for child abuse or neglect (Puls et al., 2019). Both preterm birth and prolonged hospitalization are known family stressors and risk factors for family dysfunction and child abuse (American Academy of Pediatrics Committee on Fetus and Newborn, 2008). Family risk factors identified at discharge require close follow-up and support. Risk factors for families that lead to closer follow-up are financial difficulties, history of or current substance use disorder, inadequate prenatal care, domestic violence, marital instability, and parental mental health diagnosis of anxiety or depression.
Link to Learning
The Center for Healthy Families provides support to teen, foster, and adoptive parents through community- and school-based services.
Discharge to home may not be possible if the infant is medically unready or the home environment is inadequate for the needs of the infant. In these instances, transfer to a less acute hospital for care or to a foster care placement that can provide adequate care may be an appropriate interim home until is it determined that the family can safely care for and house the infant (Smith & Stewart, 2021).
Link to Learning
WIC provides financial support for supplemental food and nutritional education for low-income families with infants and children.
Infant Hospice Care
When an infant is nearing the end of life, they may need specialized medical care, called hospice care. It includes multidisciplinary care as a consulted service for high-risk infants who have an incurable terminal disorder. Any infant who has been found to have a disorder or disease state that has made it so that surgical and medical interventions will not significantly improve their health or well-being and who will experience a shortened lifespan because of those diagnosed disorders or diseases qualifies for hospice care. The hospice organization provides medical home visits, home nursing visits, respite care for the care providers, pain and comfort measures, and bereavement support for the whole family (Smith & Stewart, 2021). Part of the hospice team’s work is to provide a letter stating the infant’s do not resuscitate status and to share that information with local emergency medical services.