External / Internal Conditions

 Visible external conditions compared with other internal conditions newborns face that bring them into the NICU. This explores how each condition presents different medical challenges for nurses and families, ethical dilemmas, and impacts on the early child development in neonatal care.

 External / Visible Conditions

 Case type: Surgical separation of conjoined twins. Conjoined twins are widley known about for their intensity level; and saving one twin might risk or cause death to the other, so every step is crucially important. 

Key dilemma: Is it ethical to intervene if the outcomes may be unequal? Who makes this call? Ethics in the NICU world have come to decisions where "no option is free from serious moral wrongdoing." Usually, the. decisions being made are made with the concern to prioritize the best interest of the child, even when not directly knowing. Outcomes always differ. From a biological/psychological angle, twins always share early sensory environments, like the womb, and separation can ultimately disrupt co-regulation and twin bonding in the early stage of life. This raises the question about interdependence  and self identity at birth.

 Visible conditions newborns are born with that require multiple surgeries face the ethical issue of quality of life vs. aggressive surgical intervention. Key questions parents/guardians have are: Are repeated surgeries in infancy justified? Who decides what "normal appearance or function should be? Which leads into the ethical perspective - neonatal care in the hospital has advanced faster medically than ethically. This then creates gaps in the decision making framework. From a psychology angle, humans believe that early caregiver response helps shape attachment and self perception later with the baby. Overall, these visible differences can effect parental bonding with the child during infant stage and some are concerned with social perception.

Critical heart defects require early, if not, immediate surgery. This leads into the ethical issue of high-risk interventions vs. potential long term disability.  Do people continue the aggressive, harsh treatment or limit the baby's care? Doctors, nurses, and parents often disagree with each other,  Some want "eveything done," while others consider the stopping of intense treatment. From a biological standpoint, the deprivation of oxygen affects the brain development. After treatment, long hospital stays can alter early sensory as they are deprived from the outside world and have lack of bonding experiences. 

Congenital Diaphragmatic Hernia, also known as CDH, is where the organs shift into the chest causing the lungs to be underdeveloped. An ethical issue behind this is survival vs. prolonged suffering and invasive care. CDH is is commonly used as a framework for exploring the complex decisions made in the NICU. 

A perspective given by the parents: This is a real documented experience "We reclocated for months through surgery and NICU stay. Survivors Guilt / Secondary Trauma This shows the long term logistical and emotional trauma and burden these families go through. From a biological angle, the chronic ventilation and interventions affect lung and early brain development. These babies are also exposed to high stress environments early in life. 

 Perspectives (Interviews/ Lived Experiences)

NICU Nurses and Neonatologists

• The staff in the NICU face frequent moral distress because of the repeated high stake decions evryday. 

• Nurses often act as the childs family advocates and build close emotional bonds with the newborn child and with the parents through the processes. 

• These nurses struggle with telling the families honesty and protecting them emotionally. 

 Pediatric Bioethics

• The decisions made in the NICU are rarely defined as either "right" or "wrong"

• The decisions focus on:

  • The best interest of the child

  • Balancing autonomy vs. survival

  • Parental autonomy vs. medical expertise 

 Parent Advocates and Families

• Parents of NICU children commonly go through the same stress. Not exact amount, but stress. They often experience:

  • Guilt over past decisions 

  • Long term trauma

  • Pressure during choices that could mean life or death

• Families must navigate together through:

  • Complex medical systems everywhere

  • Conflicting expertise opinions

  • Emotional attachment and how it effects realistic outcomes