Communication in the neonatal ICU for Spanish speaking parents: a qualitative interview study.

BACKGROUND: In the neonatal intensive care unit (NICU), health outcome disparities exist between patients with limited English proficiency (LEP) and those proficient in English. Our objective was to investigate the communication experience of parents with LEP in the NICU to learn how to mitigate such health disparities. METHODS: A certified bilingual provider conducted seventeen interviews of parents who identified Spanish as their preferred language and whose newborn was admitted to the NICU for ≥ 1 week. Interviews were conducted August 2020 - December 2021. Conventional content analysis utilizing an inductive open coding process was performed. RESULTS: The experiences of Spanish speaking parents with LEP in the NICU can be characterized by 3 main themes: 1) Information accessibility 2) Perspectives about interpreters and 3) Emotional consequences. CONCLUSIONS: Our findings can inform neonatal quality initiatives to facilitate timely and good communication for NICU families with LEP.

Enlarged Cavum Septi Pellucidi and Vergae in the Fetus: A Cause for Concern.

OBJECTIVES: To investigate fetal cases identified at our institution to determine whether an enlarged cavum septi pellucidi or cavum vergae is associated with other fetal abnormalities and whether its presence warrants more detailed investigation of the fetus. METHODS: In a retrospective study, 15 high- and low-risk patients undergoing prenatal sonography who had an enlarged cavum septi pellucidi or cavum vergae identified were reviewed. Data were collected for the sonographic study indication, gestation age at diagnosis of a prominent cavum, and associated anomalies. Follow-up outcome data regarding further imaging, karyotype, diagnosis of brain anomaly, and associated congenital abnormalities were obtained. RESULTS: Fifteen patients met the inclusion criteria. Nine patients were identified as having a prominent cavum septi pellucidi, and 6 were identified as having a prominent cavum vergae. The mean gestational age ± SD was 22.7 ± 5.9 weeks. Eleven patients made it to delivery. Of the 15 patients, 4 were thought to have trisomy 21, and 13 had congenital anomalies. Outcomes included 10 major adverse outcomes, 4 cases with normal development or minor abnormalities, and 1 lost to follow-up. An isolated dilated cavum on prenatal sonography was seen in 5 cases: 1 with lissencephaly on a neonatal examination, 3 premature deliveries (1 demise, 1 hospice, and 1 normal), and 1 unknown. CONCLUSIONS: Our cohort had many associated clinical anomalies: 3 confirmed trisomy 21 and 1 probable trisomy 21, 2 genetic disorders, and 10 major adverse outcomes, 5 of which were grave. Although we studied a small cohort, we conclude that an enlarged cavum septi pellucidi or cavum vergae warrants consideration of genetic counseling, which may include noninvasive prenatal testing (cell-free DNA), amniocentesis with microarray testing, or both.

Neonatal Graves disease with persistent hypoglycemia: A case report.

Neonatal Graves disease is the most common cause of hyperthyroidism during the newborn period. Maternal Graves disease increases the risk of intrauterine growth restriction, small for gestational age, and neonatal Graves disease. Intrauterine growth restriction and small for gestational age are associated with hypoglycemia and transient neonatal hyperinsulinism. Neonatal Graves disease with severe persistent hypoglycemia has not been well described. We present the case of a female patient born at 34 weeks and 3 days with a birth weight of 1.6 kg (fifth percentile) to a mother with recent treatment for Graves disease. Prenatal ultrasounds were significant for intrauterine growth restriction and small for gestational age. The mother did not begin hyperthyroidism medical therapy until 23 weeks and 2 days of gestation. After the infant was born, the infant not only had symptoms of hyperthyroidism such as tachycardia and abnormal thyroid values but also had persistent hypoglycemia, which could be due to maternal propranolol usage, prematurity, IUGR, increased metabolism due to neonatal Graves, and transient stress-induced hyperinsulinism. The infant was started on methimazole for hyperthyroidism and propranolol for tachycardia. She was also started on diazoxide for persistent hypoglycemia. By 6 months of age, the hyperthyroidism and hypoglycemia had resolved. This is an interesting case of neonatal Graves disease with severe persistent hypoglycemia which we suspect is due to transient neonatal hyperinsulinism induced by multiple stress responses.

Recommendations for creating a collaborative NICU environment to support teamwork and trainee education.

In a 2022 survey, a majority of neonatology program directors reported regular conflict between neonatal-perinatal fellows and frontline providers (FLPs) (i.e., neonatal nurse practitioners (NNPs), neonatal physician assistants (PAs), and neonatal hospitalists). This paper reviews recommendations of a multidisciplinary workgroup for creating a more collaborative unit environment that supports teamwork and education. The self-study framework is a helpful tool to identify specific pressure points at individual institutions. Implementing clear guidelines for procedural distribution and role clarification are often critical interventions. FLPs and Pediatric Physician Trainees may benefit from conflict management coaching and communication training. At the same time, we recommend that respective leaders support a psychologically safe environment for team members to feel safe to solve problems on their own. Going forward, more work is important to optimize teamwork in the setting of anticipated staffing shortages, limitations to resident neonatology exposure, changes in training requirements, and ongoing development of the FLP role.

A neonatal case of vascular ring with Alagille syndrome.

A female infant, born at 37 week 5 days to a mother via induced vaginal delivery for preeclampsia, was prenatally diagnosed with a right aortic arch with vascular ring. On the third day of life, the infant exhibited a bronze-gray coloration, and a direct bilirubin of 1.7 mg/dL was detected. The abdominal ultrasound did not visualize the gallbladder. Clinically, the infant displayed features consistent with Alagille syndrome, including unusual facial appearance, butterfly vertebrae, cardiovascular defects, and cholestasis. The geneticist noted that the mother of the patient also exhibited similar features. Both the infant and the mother were diagnosed with Alagille syndrome, both having the same heterozygous JAG1 gene (NM_000214.2) variant (c.1890_1893del, p.Ile630Metfs*112). We believe that the vascular ring observed in our patient is the first reported instance of a vascular ring associated with Alagille syndrome.

Retrospective Pediatric Telepalliative Care Experience.

Background: Rady Children's Hospital (RCH) offers an outpatient pediatric palliative clinic that began offering telepalliative care in 2016. Objectives: This study describes demographics of parents receiving pediatric telepalliative care, patient/family satisfaction with telepalliative care, and patient/family perspectives. Design: Retrospective electronic medical record chart review (2016-2020) of telepalliative patients at RCH (San Diego, USA), including satisfaction surveys. Documented quotes from telepalliative care consultations were analyzed thematically. Results: Fifty-six patients were seen through 181 telepalliative visits. Demographics: Forty-three percent were female and 32% were Hispanic/Latino. Ages ranged from 3 months to 25 years. Average Palliative Performance Scale was 47%. Seventy-nine percent used gastrostomy tubes for nutrition, but only 29% used home ventilation. Eighty-two percent completed a Physician Order for Life-Sustaining Treatment. Goals for 84% of patients were for life prolongation and attempt resuscitation. Visits averaged 86 minutes. Twenty-five surveys were returned: 92% felt very satisfied and 96% said the video visit was the same, better, or much better than an in-person visit. Sixty-four percent said the video visit was more convenient and 68% felt the video visit was safer. Identified themes from telepalliative consultations included advocacy for their child, challenges surrounding care for children with complex medical needs, medical team communication, caregiver support, facing uncertainty, and decision making. Conclusions and Implications: Pediatric patients receiving telepalliative care varied in demographics, functional status, and goals of care. Telepalliative care can provide good quality of care and patient satisfaction. In a telepalliative setting, parents were able to communicate challenging aspects of care including navigating uncertainty, finding support, and decision making.

Impact of Home-Based Pediatric Palliative Care on Hospital and Emergency Department Utilization at a Single Institution.

Background: There is limited data on home-based pediatric palliative care (PPC) demographics and utilization outcomes. Objective: Describe who receives home-based PPC and compare emergency department visits, hospital admissions, and hospital days admitted in the one year before and after initiation of home-based PPC. Design: Exploratory retrospective medical chart review. Settings/Subjects: Patients, from birth to their 21st birthday, who received home-based PPC during January 1, 2015 to July 31, 2016 at a single site. Measurements: Demographics and hospital utilization were extracted from the medical chart. Results:N = 154. Comparing one year before and after initiation of home-based PPC, the median number of hospitalizations decreased from 2 to 1 (p < 0.001), and the median total number of hospital days admitted decreased from 16 to 4 days (p < 0.001). Conclusions: Children enrolled in a home-based PPC program experienced a significant decrease in the number of hospital admissions and hospital days admitted.

Empowering Pediatric Palliative Homecare Patients and Caregivers with Symptom Management Plans.

Pediatric palliative home-based care has been shown to improve symptoms, quality of life, and coordination of care. Despite these successes, hospital utilization in our own palliative home-based care population remained high as some caregivers lacked confidence to manage symptoms at home and had difficulty in recalling or accessing "sick care plans." Our team developed the Symptom Management Plan (SMP), a multi-system "sick care plan," as a quality improvement project with the aim of improving caregiver confidence to manage symptoms at home. An Electronic Health Record-based SMP template was created for common symptoms: respiratory distress, seizures, feeding intolerance, and constipation with core subspecialists' input. Individualized SMPs were created and reviewed with caregivers at every subsequent palliative home nursing visit. Caregivers were surveyed on their confidence 3 and 6-months post-implementation. Resource utilization was analyzed throughout implementation. At 6 months, 73% of caregivers reported "better" or "much better" confidence in managing their child's symptoms after using the SMP, and 76% of caregivers perceived the SMP prevented urgent care or emergency department (ED) visits. After the SMP was launched, the rate of ED visits decreased from 0.86 to 0.47 per 100 patient-days, and admissions decreased from 0.56 to 0.39 per 100 patient-days. These rates further decreased to 0.31 ED visits and 0.19 admissions per 100 patient-days within 4 and 6 months. Introducing the SMP for our home-based palliative care patients was associated with improved caregiver confidence in managing acute symptoms at home and a reduction in hospital utilization.

Decisions Parents Make When Faced With Potentially Life-Limiting Fetal Diagnoses and the Importance of Perinatal Palliative Care.

When parents face a potentially life-limiting fetal diagnosis in pregnancy, they then have a series of decisions to make. These include confirmatory testing, termination, and additional choices if they choose to continue the pregnancy. A perinatal palliative team provides a safe, compassionate, and caring space for parents to process their emotions and discuss their values. In a shared decision-making model, the team explores how a family's faith, experiences, values, and perspectives shape the goals for care. For some families, terminating a pregnancy for any reason conflicts with their faith or values and pursuing life prolonging treatments in order to give their baby the best chances for survival is the most important. For others, having a postnatal confirmatory diagnosis of a life limiting or serious medical condition gives them the assurance they need to allow their child a natural death. Others want care to be comfort-focused in order to maximize the time they have to be together as a family. Through this journey, a perinatal palliative team can provide the support and encouragement for families to express their goals and wishes, as well as find meaning and hope.

Haemodynamic effects of premedication for neonatal intubation: an observational study.

OBJECTIVE: To examine changes in blood pressure (BP), cardiac output (CO) and cerebral regional oxygen saturation (rScO2) with administration of premedication for neonatal intubation. DESIGN: Pilot, prospective, observational study. Oxygen saturation, heart rate, CO, rScO2 and BP data were collected. Monitoring began 5 min prior to premedication and continued until spontaneous movement. SETTING: Single-centre, level 3 neonatal intensive care unit PATIENTS: 35 infants, all gestational ages. 81 eligible infants: 66 consented, 15 refused. INTERVENTIONS: Intravenous atropine, fentanyl or morphine, ±cisatracurium MAIN OUTCOME MEASURES: BP, CO, rScO2 RESULTS: n=37 intubations. Mean gestational age and median birth weight were 31 4/7 weeks and 1511 g. After premedication, 10 episodes resulted in a BP increase from baseline and 27 in a BP decrease. Of those whose BP decreased, 17 had <20% decrease and 10 had ≥20% decrease. Those with <20% BP decrease took an average of 2.5 min to return to baseline while those with a ≥20% BP decline took an average of 15.2 min. Three did not return to baseline by 35 min. Following intubation, further declines in BP (21%-51%) were observed in eight additional cases. One infant required a bolus for persistently low BPs. CO and rScO2 changes were statistically similar between the two groups. CONCLUSION: About 30% of infants dropped their BP by ≥20% after premedication for elective intubation. These BP changes were not associated with any significant change in rScO2 or CO. More data are needed to better characterise the immediate haemodynamic changes and clinical outcomes associated with premedication.

A fetal diagnostic center's referral rate for perinatal palliative care.

BACKGROUND: Fetal specialists support standardizing the practice of offering women palliative care for life limiting fetal diagnoses. However, there is little data available regarding what fetal specialists do in practice. Since 2003, our center has kept a database of all women referred for fetal complications. METHODS: Retrospective electronic chart review of pregnant women between 2006 and 2012 using UCSD's Fetal Care and Genetics Center referral database. Objectives were to determine: (I) how many high risk pregnancies referred to the University of California San Diego Medical Center (UCSD) over a 6-year period have potentially life limiting fetal diagnoses; (II) pregnancy outcome; and (III) referral rate to perinatal palliative care. RESULTS: Between July 2006 and July 2012, 1,144 women were referred to UCSD's Fetal Care and Genetics Center, a tertiary care center. Of that cohort, 332 women (29%) were diagnosed prenatally with a potentially life limiting fetal diagnosis. Most women were Hispanic or Latino, married, and had previous children. The median gestation at confirmed diagnosis was 19 weeks. Trisomy 13, Trisomy 18, and anencephaly comprised 21% of cases. The pregnancy outcome was determined in 95% cases: 56% therapeutic abortion, 16% intrauterine fetal demise, and 23% live birth. Only 11% of cases were referred to perinatal palliative care. CONCLUSIONS: The vast majority of women with potentially life limiting fetal diagnoses are not referred to perinatal palliative care. Evaluation of how to integrate palliative care into high-risk obstetrics is needed.

Primary palliative care in neonatal intensive care.

This article explores the 2014 Institute of Medicine׳s recommendation concerning primary palliative care as integral to all neonates and their families in the intensive care setting. We review trends in neonatology and barriers to implementing palliative care in intensive care settings. Neonatal primary palliative care education should address the unique needs of neonates and their families. The neonatal intensive care unit needs a mixed model of palliative care, where the neonatal team provides primary palliative care and the palliative subspecialist consults for more complex or refractory situations that exceed the primary team׳s skills or available time.

A Neonate with Susceptibility to Long QT Syndrome Type 6 who Presented with Ventricular Fibrillation and Sudden Unexpected Infant Death.

BACKGROUND This is a case of a neonate with susceptibility to long QT syndrome (LQTS) who presented with a sudden unexpected infant death. Experts continue to debate whether universal electrocardiogram (ECG) screening of all newborns is feasible, practical, and cost-effective. CASE REPORT A 19-day-old neonate was found unresponsive by her mother. ECG showed ventricular fibrillation and a combination of a lidocaine drip plus multiple defibrillations converted the rhythm to normal sinus. Unfortunately, MRI brain imaging showed multiple infarcts and EEG showed burst suppression pattern with frequent seizures; life supportive treatment was stopped and the infant died. Genetic testing revealed two mutations in the KCNE2 gene consistent with susceptibility to LQTS type 6. CONCLUSIONS We believe this case is the first to demonstrate both a precipitating electrocardiographic and genetic cause of death for an infant with LQTS, showing a cause-and-effect relationship between LQTS mutation, ventricular arrhythmia, and death. We wonder whether universal ECG newborn screening to prevent LQTS death could have saved this baby.

Attempting to Honor Beliefs of Jehovah's Witnesses at the Edge of Viability in an Infant Born at 23 Weeks' Gestational Age.

BACKGROUND: Infants born at 23 weeks' gestation have a poor prognosis and require intensive care, including blood transfusions, to survive. Generally speaking, the decision to forgo life support is acceptable. Jehovah's Witnesses believe that life is sacred and want lifesaving interventions except for blood transfusions. Therefore, an ethical dilemma exists when a baby is born on the edge of viability to parents that are Jehovah's Witnesses. In this case, if parents and healthcare professionals disagree on the best interests of the child, the medical team should obtain a court order from the state to intervene. CASE REPORT: We present the case of an infant born at 23 weeks' gestation to parents who are Jehovah's Witnesses. The parents wanted full life-support, except for blood transfusions, to be given. The clinical team obtained a court order to transfuse the infant. The infant unfortunately died despite all efforts. CONCLUSIONS: Currently, it is nearly impossible to honor the beliefs of Jehovah's Witnesses to provide lifesaving treatments without blood transfusions for infants born at the border of viability. If the goal is to prolong life, the standard of care for a premature infant is for a doctor to obtain a court order to override the beliefs and wishes of Jehovah's Witness parents and transfuse blood products as medically indicated. Although bloodless techniques for high-risk surgeries are under development, care for premature infants at 23 weeks' gestation necessitates red cell transfusions.

Parent Misidentification Leading to the Breastfeeding of the Wrong Baby in a Neonatal Intensive Care Unit.

BACKGROUND Because there are clear benefits to breast milk over formula for infants, the goal of the World Health Organization is to increase breastfeeding rates. As more women are breastfeeding and providing breast milk to newborns in hospitals, there is increased risk for administration error. CASE REPORT A hospitalized preterm infant was breastfed by the wrong mother when the Neonatal Intensive Care Unit Nurse failed to properly identify the mother. An infectious disease workup done on the donor mother was negative, but the recipient infant was positive for cytomegalovirus (CMV). Since the donor mother who accidentally breastfed the wrong infant was CMV-negative, the baby in our case had likely been exposed to CMV from his biological mother. The attending physician apologized to all of the family members involved, but the father of one infant continued to express anger. CONCLUSIONS To our knowledge, this is the first case of accidental breastfeeding in a hospital setting to be described in the literature. Parental misidentification and a language barrier led to the error. An infectious disease workup did not find any evidence of disease transmission from this event. Increased attention to minimize breast milk errors is needed. Despite a long history of wet nursing, unregulated breast milk sharing and cross nursing is not recommended. Instead, if a mother cannot provide breast milk herself, pasteurized donor breast milk from breast milk banks is encouraged.

Maternal Iodine Exposure: A Case of Fetal Goiter and Neonatal Hearing Loss.

A 27-year-old gravid 1 at 27 weeks 6 days with a history of hypothyroidism had an ultrasound that demonstrated a 3.9 × 3.2 × 3.3-cm well-circumscribed anterior neck mass, an extended fetal head, and polyhydramnios. Further characterization by magnetic resonance imaging (MRI) showed a fetal goiter. During her evaluation for the underlying cause of the fetal goiter, the patient revealed she was taking nutritional iodine supplements for treatment of her hypothyroidism. She was ingesting 62.5 times the recommended amount of daily iodine in pregnancy. The excessive iodine consumption caused suppression of the fetal thyroid hormone production, resulting in hypothyroidism and goiter formation. After the iodine supplement was discontinued, the fetal goiter decreased in size. At delivery, the airway was not compromised. The infant was found to have reversible hypothyroidism and bilateral hearing loss postnatally. This case illustrates the importance of examining for iatrogenic causes for fetal anomalies, especially in unregulated nutritional supplements.

A five-year review of referrals for perinatal palliative care.

BACKGROUND: San Diego Hospice and the Institute for Palliative Medicine created one of the earliest perinatal palliative care programs in the country. Only four studies have reported outcomes for pregnant women referred to perinatal palliative care services for potentially lethal prenatal diagnoses. OBJECTIVES: To learn: (1) who is referred for perinatal palliative care at San Diego Hospice; (2) what happens after referral to perinatal palliative care; and (3) what happens after delivery for this population. DESIGN: This was an exploratory retrospective electronic chart review of all patients referred to a home perinatal palliative program. RESULTS: Sixty-six women were referred to the San Diego Hospice and the Institute for Palliative Care home perinatal palliative care program between October 2006 and August 2012. Mean age was 31 years. The majority of women were Hispanic, Christian/Catholic, married, with full prenatal care, and previous children. Average gestational age at referral was 27 (18-39] weeks. Thirty-two cases were referred for Trisomy 13, Trisomy 18, or anencephaly. Palliative care services were given over a mean 45 (0-132) days and 3 (0-12) visits prior to delivery. Most women completed a birth plan prior to delivery, chose palliative treatment only, and made final arrangements with the palliative team. Forty-one deliveries resulted in a liveborn infant. Twelve liveborn infants survived past 72 hours and were admitted to pediatric hospice care. CONCLUSIONS: One-third of women met with the palliative care team only once or twice prior to delivery, indicating a need for earlier referral to provide more comprehensive palliative care.

Evaluation of the content and process of informed consent discussions for neonatal research.

Studies of informed consent for neonatal research suggest that there are gaps in parental understanding of key aspects of research. Few studies have examined parental understanding and investigator disclosure simultaneously. This pilot study evaluated the content and processes of 21 audio-recorded consent discussions with parents of eligible newborns, as well as parents' self-reported comprehension of research elements following these discussions. Gaps in both investigator disclosure and parental understanding were found. Nevertheless, parents reported comprehension of a greater number of research elements than were actually disclosed by investigators. Our preliminary results indicate the feasibility and potential utility of jointly examining parental understanding and investigator behavior to characterize consent for neonatal research. Directions for future research are suggested.