What Is a Parent to Do?: The Case of Baby G

Born at 24 weeks gestation, Baby G now lies in a neonatal intensive care unit two months post-birth. He has pulmonary hypoplasia, congenital scoliosis, and swallowing issues that will require placement of a feeding tube, and bowel dystonia that interferes with his ability to absorb feedings. Shortly after birth, he experienced a cardiopulmonary arrest and now has obvious neurological impairments. As a result of incomplete development of his lungs and severe chronic lung disease, he cannot breathe on his own. Because of his chronic respiratory failure, tracheostomy and long-term assisted ventilation was offered as an option that would allow him to be discharged from the acute care setting. However, his congenital scoliosis and severe neurocognitive impairments mean that he has little potential for eventual weaning from assisted ventilation. While there are surgeries available to correct his scoliosis, the outcome of such surgeries is uncertain; they could not be performed before two to three years of age, and the risks are increased due to his pulmonary co-morbidities.

The injury to Baby G’s neurocognitive function means that he is unlikely to ambulate or even speak, and though it is too soon to tell, he may not be aware of his environment. He suffers from recurrent urinary tract infections, is at high risk of systemic infection, and has poor central nervous system defense responses. Therefore, he is vulnerable to recurrent catastrophic organ system failure and eventual death from such episodes. Overall, his lifespan is likely to be shortened, though exactly how long he can be expected to survive, even with the most intensive support, cannot be predicted—he could live for months or years.

One of the main obligations of health-care providers is to relieve the pain and suffering of their patients. Baby G’s nearly continuous irritability and behavioral malaise, despite use of sophisticated pain management regimens, is a significant source of moral distress for the health-care team. The infant is inconsolable.

Baby G’s parents are married, in their mid-twenties, high-school graduates, and employed in low-paying jobs. Their wages make it difficult to take any time off. They live in an apartment too small for the care of a technology-dependent child, and they lack the resources to obtain a residence that can accommodate his needs. While extended family live in the area, there is no expectation that the family could help much, given their own socioeconomic constraints. While this was a planned pregnancy, a lack of insurance and economic constraints prevented consistent and timely prenatal care.

The state in which Baby G’s parents live provides moderate benefits for children with medical needs like those of Baby G, but it would not provide support services in the home to facilitate a home discharge. Further, there are few resources within the local community for pediatric residential care for infants with complex medical conditions. Therefore, residential placement would necessitate this infant living in a state hospital, at considerable distance from the parents. Even with such a residential placement, there are few resources available aimed at facilitating and enhancing Baby G’s neurocognitive development.

Baby G’s parents are unable to decide about the treatment options that the health-care team has offered, which range from full interventions with long-term assisted ventilation to pursuit of a palliative and less intensive treatment plan with an expectation of the proximate death of Baby G. The parents are conflicted about their own psychological pain and their observations of their infant’s suffering.