One NICU Patient's Rocky Discharge Amid the Infant Formula Shortage: Case Study
This case study was presented as part of the Health Equity Rounds on September 16, which was focused on the infant formula shortage and its implications for families across the U.S. — especially low-income families accessing WIC benefits. Permission was obtained from the patient’s mother to share the family’s story on HealthCity.
Health Equity Rounds: Case Study
This infant, Baby E, was born prematurely in the midst of the formula shortage. Living in the NICU since birth, Baby E had a difficult and medically complex hospital course, most notably from a nutrition perspective for growth problems and feeding difficulties that ultimately required a special hydrolyzed formula that is easier to digest than standard infant formula.
After starting on the hydrolyzed formula, Baby E’s weight improved, and the multidisciplinary team agreed that the baby was medically ready for discharge. At home, Baby E would still need the hydrolyzed formula to maintain healthy nutrition. The mother, who had been waiting eagerly for weeks to take her baby home, was thrilled that Baby E was nearing a discharge date.
Discharge planning involves consideration of many factors beyond just medical issues, and this is especially true in the NICU. In this baby's case, several aspects of the family's social situation were crucial factors in establishing a safe discharge plan.
First, the mother had recently immigrated to the U.S. and had limited English proficiency and social supports in the area. Though she was at the baby's bedside daily, the mother did not have a steady place to live. During the prolonged NICU stay, she alternated between a variety of temporary living situations, so at the time of discharge she needed more permanent family shelter placement that could also accommodate the baby.
This is where the formula shortage contributed to a catch-22 for discharge planning for this patient.
Since Baby E would continue to require hydrolyzed formula at home, the NICU team needed to submit a variety of paperwork to the patient's WIC office and durable medical equipment (DME) company to arrange special formula delivery to the patient's home. However, they required shelter placement in order to have an address for that formula delivery.
The growing formula shortage — and the specialized needs of this particular patient — made it difficult to identify a suitable formula that would be available in an outpatient setting. Without an available formula or home address identified, the medical team cannot fill out the WIC special formula form or place DME orders for formula delivery.
To make matters worse, the mother was unable to get family shelter placement without a stated discharge date, which could not be finalized until an available formula was identified. Overall, it was difficult to know whether any particular formula would be available for delivery without knowing the address to which it would be ultimately delivered.
This catch-22 presented a huge challenge that the NICU team needed to navigate in order to ensure a safe discharge.
Ultimately, the patient was able to go home after nearly a week of delay, with collaboration from our interdisciplinary colleagues: inpatient and outpatient dieticians, social work, case management, nursing, and medical teams.
Advocacy efforts included coordination with local WIC offices and DME companies to assess availability of appropriate formulas in the community, as well as direct outreach to Abbott customer service (as Abbott is currently the sole contractor for infant formula for WIC in Massachusetts).
After extensive research into DME company options, a non-Abbott formula was determined to be the best choice for outpatient availability. With coordination between the inpatient and outpatient dieticians, Baby E was successfully trialed on this formula while still in the NICU, which is not generally available to inpatients as it is not on our hospital's formulary. Luckily, Baby E’s mother was ultimately able to receive shelter placement in advance of discharge and, subsequently, an address was obtained to register with the DME company.
Upon discharge, some potential barriers to care still exist, including the onus on the mother to call the DME company every month to refill the formula, which ties back to the her limited English proficiency as a possible challenge. Baby E is thankfully doing well now and is being closely followed by the Grow Clinic at Boston Medical Center, an outpatient subspecialty clinic that provides comprehensive medical, nutritional, developmental, social services, and dietary care for children with feeding, nutrition, and growth difficulties.