We were joined by Deidre Jarrell, Baby E's nurse, who has been with the NICN since its inception. She has specialized training to care for infants like Baby E who have suffered brain damage at birth. She works 12-hour shifts, attends to Baby E and provides updates to family members, who can call anytime for information about the baby's status.

As we surround Baby E's crib, the infant would periodically stir or kick her tiny feet. Bags of fluid were perched above her, dripping clear liquid into her system. She was sedated, and a machine was breathing for her. She was lying on top of a blue blanket that was set to maintain her temperature close to 33.5 degrees Celsius.

Baby E is receiving cooling therapy, which involves inducing a hypothermic state for 72 hours. According to Dr. Shimotake, the cooling therapy prevents further brain injury in babies born in a hypoxic (oxygen-deprived) state. Cooling needs to be started within the first six hours of birth after asphyxiation to have a benefit, and this therapy is only for babies born full-term.

After 72 hours of the cooling therapy, Baby E's body temperature will be slowly increased (0.5 degrees Celsius per hour) to her normal temperature. Her brain will then be imaged with an MRI to assess the primary injury, including the location and severity, to help develop a prognosis and determine the next steps in her long-term treatment.

Infants will spend an average of 10-14 days in the NICN. While in the NICN, they receive specialized care from a multidisciplinary team that includes neonatologists, pediatric neurologists, epileptologists, specialized NICN nurses, neuroradiologists and occupational and physical therapists. Social services, another integral component of the NICN services, are available to families and healthcare providers to help cope with the emotional stress that comes with caring for critically ill infants.

Dr. Shimotake believes families play a central role in making decisions, and healthcare providers must remain sensitive and open to each family's desires. "We deal with very sick babies here, so we participate in some of the most emotionally intense moments in these families' lives. In addition to specialized care for the babies, we provide important information to families that they may need to make difficult decisions. We don't make decisions alone."

Dr. Shimotake checks his patient's pupils
for responses to light

In working with critically ill infants, healthcare providers are sometimes faced with the delicate balance between prolonging life and making decisions about palliative care. Some infants arrive at the NICN and are monitored, treated and discharged. Some will develop long-term neurological abnormalities, requiring lifelong specialized care. And some will have life support withdrawn due to an irreversible brain injury that shows no sign of recovery.

Those infants who are discharged from the NICN will visit their regular pediatrician and undergo ongoing physical therapy and follow-up with physicians at the high-risk neonatology clinic. They and their parents meet with a number of specialists, including neonatologists, developmental psychologists, physical therapists and nutritionists.

As I watch Baby E, I wonder about her prognosis and life after the NICN. Will she be among the patients that gets life support withdrawn? Or will she regain her strength and go home to her family? How is her family coping, not being able to hold their baby, who is covered in tubes and connected to so many machines? How are they processing the endless amount medical information presented by Baby E's medical team?



Despite the uncertainty, Baby E is lucky: She is among the first infants in the United States to receive innovative neonatal neuro-intensive care that has the potential to improve her overall outcome and quality of life.

"There is a tremendous amount of hope," says Dr. Shimotake.
"We’re doing something for babies no one could help before."

*Eisha Zaid is a second-year student at the UCSF School of Medicine and author of the blog EISHA'Z INNER WORLD which describes her journey through medical school.