50: Counseling Parents Before High-Risk Delivery

The nurse calls to notify you of a pending high-risk delivery. You are on delivery room duty, and you are asked to counsel the parents before their infant is delivered.

1. Are both parents and other important family members available? Is a translator needed? Discuss the situation with the obstetric staff. A family member is often too emotionally involved to accurately translate.

2. Is the mother too sick or uncomfortable to be able to adequately participate in the discussion? In this situation, it is essential to include other family members.

3. How well do the parents understand their current situation? Discuss the circumstances with the obstetric staff, and ask the parents what they understand.

4. What do they know about neonatal intensive care units (NICUs), pregnancy and neonatal complications, chronic health problems, and neurodevelopmental disability? This helps you in beginning the discussion.

Neonatologists are called to counsel expectant parents in a variety of circumstances. These include:

1. Preterm birth

2. Intrauterine growth restriction (IUGR)

3. Maternal drug use

4. Signs of fetal distress

5. Congenital anomalies

1. Maternal/paternal data. Obtain information regarding the age of both parents; mother's obstetric, past medical, and social history; history of the pregnancy, medications, and pertinent laboratory data; and family history.

2. Fetal data. Review fetal information with the obstetric staff, including accuracy of pregnancy dating, findings on prenatal ultrasounds, and signs of fetal distress.

1. General approach to parent counseling. Although circumstances are often less than ideal, it is important to communicate as effectively and empathetically as possible. Sit down, communicate at eye level, take time to introduce yourself and your role, and talk in a clear and unhurried manner. Explain all medical terms, avoid using abbreviations and percentages (many people cannot comprehend them), and acknowledge uncertainties. Ask if they understand, and summarize the most important points. Ask if they have any questions and offer to follow-up with them if they have more questions.

2. Goal of counseling session. Because a complete discussion is often unrealistic, your goal is to help parents anticipate and to provide a framework for understanding what happens during delivery and in the NICU.

3. Content of discussion. Discuss the infant's chances of survival, possible complications, and the range of long-term outcomes. Review appropriate references and other chapters in this book and textbooks for more information. Describe the anticipated activity during delivery. Giving them the opportunity to tour the NICU allows them to see the monitoring and life support equipment, so that they can better see their own baby underneath it all.

4. Bedside manner. For many, the shock and anxiety of facing difficult circumstances challenges their ability to process. Avoid overloading the family with information. Your communication is most effective if conveyed in a caring, empathetic, and unhurried manner. Understand that hope helps people get through the most dire situations.

Although medical terms are used in this section, avoid using medical terms as much as possible when counseling parents.

1. Preterm delivery. The more immature the infant, the greater are the risks of death, complications, health sequelae, and neurodevelopmental disability (Table 50–1). Gestational age serves as a proxy for maturity when counseling parents before delivery.

   1. Immediate questions. Why is the mother delivering preterm? What is the gestational age of the fetus? Are there concerns about fetal growth, fetal distress, or infection?

   2. Specific issues to address with the parents

      1. Mortality. Even with aggressive intervention, the lower limit of viability is 23–24 weeks' gestation, with occasional survival reported at 22 weeks' gestation.

      2. Complications of prematurity. Complications of prematurity include respiratory distress syndrome; electrolyte and metabolic problems; infection; necrotizing enterocolitis; patent ductus arteriosus; apnea and bradycardia; anemia; and intraventricular hemorrhage and other signs of brain injury. Chronic complications include bronchopulmonary dysplasia/chronic lung disease (BPD/CLD); retinopathy of prematurity with subsequent visual problems; hearing impairment; and neurodevelopmental impairment. Complication rates increase with decreasing gestational age.

      3. Long-term neurodevelopmental outcome. Rates of neurodevelopmental disabilities increase with decreasing gestational age at birth, with the highest rates in those born before 25 weeks' gestation (see Table 50–1). Even late preterm children (born at 34–36 weeks' gestation) have higher rates of cerebral palsy and school problems than do infants born full term. Learning disability, language delays, visual perceptual deficits, minor neuromotor dysfunction, executive dysfunction, attention deficits, and behavior problems are more frequent in school-age children born preterm than in controls born full term. Nonetheless, the majority of preterm survivors have normal intelligence, graduate from high school, and become functioning adults in their communities.

2. Intrauterine growth restriction (IUGR). See also Chapter 105.

   1. Immediate questions. What is the cause of the IUGR and when was it detected? Are there signs of fetal decompensation?

   2. Specific issues to address with parents

      1. Prediction of outcome. The most important determinant of IUGR outcome is its cause. Infants with chromosomal disorders and congenital infections (eg, toxoplasmosis, cytomegalovirus) experience early IUGR, often do not tolerate labor and delivery well, and commonly have a disability. When there is fetal deprivation of uterine supply, the fetus initially compensates by reducing weight and length before head growth and, after 30 weeks' gestation, may accelerate fetal maturation. Although accelerated maturation improves fetal survival if delivered preterm, there is a cost in terms of cognitive development. Adverse intrauterine circumstances that overwhelm compensatory mechanisms lead to progressive damage to fetal organs, including the brain, and may result in fetal death.

      2. Complications of IUGR. IUGR infants are vulnerable to complications, including perinatal asphyxia, cold stress, polycythemia, and hypoglycemia.

      3. Long-term outcome. Full-term IUGR infants with fetal deprivation of supply have an increased risk of motor and cognitive impairments (cerebral palsy, minor neuromotor dysfunction, learning disability, attention deficits, behavior problems) and, as adults, cardiovascular disease, obesity, and diabetes. Preterm IUGR infants are vulnerable to the complications of both preterm delivery and IUGR.

3. Maternal use of drugs

   1. Immediate questions. Which drugs did the mother use? When and how much?

   2. Specific issues to address with parents

      1. IUGR. Infants with intrauterine exposure to opiates, cocaine, alcohol, cigarettes, and some prescription drugs can be diagnosed with IUGR (see preceding Section VI.B).

      2. Specific syndromes and risks. Fetal alcohol and fetal hydantoin syndromes are well defined but often difficult to diagnose in the neonatal period. Both carry an increased risk of intellectual disability. (See Chapter 88.)

      3. Neonatal withdrawal syndrome. Infants with intrauterine exposure to opiates, cocaine, alcohol, or some prescription medications may demonstrate neonatal withdrawal syndrome (see Chapter 103). These infants require close observation after delivery and may require medications to help them through the withdrawal period. Later, these infants have an increased incidence of school and behavior problems.

      4. Cocaine exposure and risks. Maternal cocaine use is associated with increased rates of miscarriage, stillbirth, abruption, preterm labor, and IUGR. Infants with central nervous system infarctions resulting from cocaine exposure are at risk for cerebral palsy, especially hemiplegia, as well as cognitive and sensory impairments.

4. Signs of fetal distress

   1. Immediate questions. Which signs of fetal distress are evident and for how long?

   2. Specific issue to address. The type of fetal distress and, after birth, evidence of neonatal encephalopathy and brain injury on neuroimaging, electroencephalogram, and neurodevelopmental examination (see Chapter 16) are prognostic indicators. Nonetheless, the majority of infants who demonstrate signs of fetal distress do not develop neonatal encephalopathy, persistent pulmonary hypertension, or neurodevelopmental disability.

5. Congenital anomalies

   1. Immediate questions. What anomalies have been detected and how were they noted? Is the anomaly life-threatening? What workup has been done? Have any other anomalies been detected?

   2. Specific issues to address with the parents. See Chapter 88.

      1. Diagnosis. The type of congenital anomaly, its severity, and whether further evaluation has identified other anomalies or etiology, to determine how you should counsel the parents.

      2. Prognosis. Clinical courses and outcomes have been well described for most chromosomal disorders (eg, trisomy 21, 22q11 deletion), many multiple congenital anomaly syndromes (eg, VATER/VACTERL [vertebral defects, anal atresia, tracheoesophageal fistula, and radial or renal dysplasia/vertebral defects, anal atresia, cardiac malformations, tracheoesophageal fistula, renal dysplasia and limb abnormalities] association, arthrogryposis), and some specific single anomalies (eg, meningomyelocele, congenital heart disease). The presence of a congenital anomaly increases an infant's risks of preterm birth, neurodevelopmental outcome.

      3. Counseling parents. Mothers who were counseled after prenatal diagnosis of a congenital anomaly reported in an interview a week after delivery that the consultation helped to prepare them. The study concluded that “parents want realistic medical information, specific to their situation, provided in an empathetic manner and want to be allowed to hope for the best possible outcome.”