Taking a medically fragile baby home from NICU.


There are few parental crisis that beat the stress of having a baby admitted to the neonatal intensive care unit.  Pregnancy and  birth of a baby are often life events associated with anticipation, hope adventure, intimacy, bonding and a culmination of everything wholesome and beautiful, a miracle of life! Pregnancy and birth complications that result in a NICU admission severely disrupt the plans, the hope and the anticipation. Bonding and breast feeding for a baby who needs higher level of care in the neonatal intensive care unit as opposed to a regular newborn nursery can be confusing. Reasons for admission to the NICU include mild complications that are transitional in nature and a vast majority of babies are in the NICU for a few hours to a few days. Common symptoms of complications related to prematurity and other conditions include temperature instability, breathing difficulties, blood sugar instability, jaundice and low muscle tone. Birth trauma, congenital conditions, infections are some of the neonatal conditions that lead to NICU admissions. Babies that show any signs of compromise are admitted for treatment and further work up to rule out more serious underlying causes for the symptoms. 


The most common reason for NICU admission is prematurity. In 2018, prematurity and low birth weight accounted for 17% of infants deaths (deaths before 1 year of age) according to the CDC. The more premature a baby is the high the risk for complications and often times these complications continue beyond the NICU stay. Chronic lung disease, breathing difficulties, feeding intolerance, failure to thrive, vision issues, hearing problems, bonding challenges are common problems among the babies who survive the NICU. 


A comprehensive discharge plan for a medically fragile infant should address:


*Medications

Discharge medications should be filled prior to discharge whenever possible. In situations where the medications can not be filled, the discharge team should ensure the parents have a clear understanding of options of obtaining medications either through pharmacy, home delivery or otherwise.


*Primary and specialty care

Medically fragile infants need close follow up for routine as well as specialized care. The family should identify a pediatrician and schedule a first follow up within 7 days of discharge . Specialty care determined  by the specific conditions that require  follow up should be established  in a timely manner since wait times for appointments can be long. Delay in care puts the infant at more risk for complications and worsening conditions.


*Durable Medical equipment

Some medically fragile infants will require medical equipment to support recovery or management of the health conditions. Babies with breathing difficulties may need nebulizers, oxygen concentrators and tubing. Babies with feeding difficulties may need feeding tubes and enteral feeding pump sets. Babies with muscular skeletal issues may need special position equipments and pillows. Often times DME is provided through vendors contracted with a hospital or a provider office. Insurance and contractual delays can lender the  needed equipment to be unavailable when needed at the home. The discharge team should prioritize establishing a contracted vendor who is covered by the babies insurance policy.


*Social determinants of health 

Conditions in the environment where people are born, live, learn, work, worship age all affect a wide range of factors such as coping skills, access to information and resources.  Access to safe and clean housing, transportation,  healthy food,  family support, mental health support, health information will optimize  the health outcome of a compromised infant. The discharging team at the hospital and the family should collaborate to explore accessibility to needed resources at home. Health disparities and equity also affect health outcomes and should be considered at discharge.



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