Understanding the Care Journey and Needs of Advanced Fetal Care Center Patients.

Introduction This study describes the parental perspective of the management and care experience of patients experiencing a pregnancy complicated by a fetal diagnosis to inform more supportive patient-centered care. Methods We conducted a prospective multicenter qualitative patient experience study at three metropolitan children's hospitals' advanced fetal care centers: the Cincinnati, Colorado, and Midwest Fetal Care Centers. Data were collected from pregnant patients who experienced the management of a pregnancy complicated by a fetal anomaly. Clinical journey data were obtained using qualitative research methods in post-birth semistructured interviews. We assembled a generalizable patient journey map to identify the general clinical encounters, and present common participant experiences from diagnosis to post-birth discharge. Results Fifteen families were interviewed; four experienced a loss (27%). Common experiences of trust, education, surrounding support, consistency, and abandonment emerged across all centers. Participant trust in their care team was gained through strong referrals, institutional reputation, and transparent outcomes. Unconditional care team support and continual reassurance was paramount to maintaining participant trust throughout their care journey. Participants appreciated both active and passive educational techniques at clinical touch points. A consistent point of contact assured participants. All families mentioned they felt close to their fetal care team; however, several mentioned that the post-birth transition of care created feelings of abandonment. Conclusions When a family understands the clinical information and feels supported, they are empowered and confident in their ability to navigate their circumstances. Listening to the parental perspective is important to delivering sensitive fetal care.

Defectos de pared abdominal anterior fetal: manejo y protocolo de seguimiento prenatal de Gastroquisis y Onfalocele. Ecuador, 2019. / Abdominal anterior abdominal wall defects: management and prenatal protocol of Gastrochisis and Omphalocele. Ecuador, 2019

Los defectos de la pared abdominal son un grupo de malformaciones congénitas poco comunes que presentan alteraciones heterogéneas y comparten una característica en común, que es la herniación o evisceración de uno o más órganos de la cavidad abdominal, debido a un defecto en la formación de la pared abdominal. Existen diversas patologías entre las que se encuentran extrofia de vejiga y extrofia de cloaca y la Pentalogía de Cantrell, sin embargo, las más frecuentes son la gastrosquisis y el onfalocele; en esta revisión se discutirá el manejo y el protocolo de seguimiento de estas dos patologías.

Abdominal wall defects are a group of rare congenital malformations, which represent heterogeneous alterations and share an uncommon characteristic, which is the herniation or evisceration of one or more organs of the abdominal cavity, due to a defect in the formation of the abdominal wall. There are several pathologies among which are bladder exstrophy and cloacal exstrophy and the Pentalogy of Cantrell, however, the most frequent are gastroschisis and omphalocele. In this article we will review and discuss the management and follow-up protocol of these two pathologies

Consenso para las prácticas de alimentación complementaria en lactantes sanos / Guidelines for complementary feeding in healthy infants

Resumen: La nutrición adecuada durante los primeros dos años de vida es fundamental para el desarrollo pleno del potencial de cada ser humano; actualmente se reconoce que este periodo es una ventana crítica para la promoción de un crecimiento y desarrollo óptimos y un buen estado de salud. Por tanto, cumplir con una alimentación adecuada en esta etapa de la vida tiene impacto sobre la salud, estado de nutrición, crecimiento y desarrollo de los niños; no sólo en el corto plazo, sino en el mediano y largo plazo. El presente trabajo ofrece recomendaciones de alimentación complementaria (AC) que se presentan en forma de preguntas o enunciados que consideran temas importantes para quienes atienden niños durante esta etapa de la vida; por ejemplo: inicio de la alimentación complementaria a los 4 o 6 meses de edad; exposición a alimentos potencialmente alergénicos; introducción de bebidas azucaradas; uso de edulcorantes artificiales y productos light; secuencia de introducción de alimentos; modificaciones de consistencia de alimentos de acuerdo a la maduración neurológica; número de días para probar aceptación y tolerancia a los alimentos nuevos; cantidades por cada tiempo de comida; prácticas inadecuadas de alimentación complementaria; mitos y realidades de la alimentación complementaria; hitos del desarrollo; práctica del "Baby Led Weaning" y práctica de vegetarianismo.

Abstract: A proper nutrition during the first two years of life is critical to reach the full potential of every human being; now, this period is recognized as a critical window for promoting optimal growth, development, and good health. Therefore, adequate feeding at this stage of life has an impact on health, nutritional status, growth and development of children; not only in the short term, but in the medium and long term. This paper provides recommendations on complementary feeding (CF) presented as questions or statements that are important for those who take care for children during this stage of life. For example: When to start complementary feedings: 4 or 6 months of age?; Exposure to potentially allergenic foods; Introduction of sweetened beverages; Use of artificial sweeteners and light products; Food introduction sequence; Food consistency changes according to neurological maturation; Number of days to test acceptance and tolerance to new foods; Amounts for each meal; Inadequate complementary feeding practices; Myths and realities of complementary feeding; Developmental milestones; Practice of "Baby Led Weaning" and practice of vegetarianism.

[Guidelines for complementary feeding in healthy infants]. / Consenso para las prácticas de alimentación complementaria en lactantes sanos.

A proper nutrition during the first two years of life is critical to reach the full potential of every human being; now, this period is recognized as a critical window for promoting optimal growth, development, and good health. Therefore, adequate feeding at this stage of life has an impact on health, nutritional status, growth and development of children; not only in the short term, but in the medium and long term. This paper provides recommendations on complementary feeding (CF) presented as questions or statements that are important for those who take care for children during this stage of life. For example: When to start complementary feedings: 4 or 6 months of age?; Exposure to potentially allergenic foods; Introduction of sweetened beverages; Use of artificial sweeteners and light products; Food introduction sequence; Food consistency changes according to neurological maturation; Number of days to test acceptance and tolerance to new foods; Amounts for each meal; Inadequate complementary feeding practices; Myths and realities of complementary feeding; Developmental milestones; Practice of "Baby Led Weaning" and practice of vegetarianism.