1. Broge, Mary Jane MSN, RN, CPNP-AC/PC
  2. Steurer, Lisa M. PhD, RN, CPNP-PC, CPN

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In the United States, there are roughly 35 000 infants born every year with congenital heart disease (CHD), with one-third of these children needing surgical intervention in the first year of life.1 Thanks to advances in surgical techniques, diagnostic imaging, and postoperative care, survival rates have improved, with greater than 90% of children with CHD surviving into adulthood.2 As survival rates have improved, it is apparent that children with CHD are at an increased risk for brain injury and developmental delay.3 The reasons for this include biological factors such as prenatal and postnatal physiology, genetics, and the use of cardiopulmonary bypass. In addition, environmental factors such as the cardiac intensive care unit (CICU) environment, prolonged hospitalization, and parental stress place these children at an increased risk for poor neurodevelopmental outcomes.3


Many infants born with CHD are admitted immediately after birth to an intensive care unit (ICU). They are separated from their parents and subjected to repeated negative and painful stimulation in an environment with loud sounds, bright lights, and interrupted sleep. Many require surgery shortly after birth and return to the CICU critically ill with surgical incisions, unstable hemodynamics, chest tubes, breathing tubes, and invasive catheters. All of these factors delay "normal" infant-parent interactions, which, in turn, negatively impacts their quality of life.


To counteract the negative environmental factors in the CICU and foster a cultural change in the way we care for these patients, our institution set out to establish a developmental care program for neonates. The vision was to promote a higher quality of life for patients and their families by providing individualized appropriate developmental care. Developmental care is a well-established component of many neonatal ICUs. As such, expertise was sought from newborn ICU colleagues and therapy services in order to gather expert opinions on developmental care. An interdisciplinary developmental care team was established consisting of physical, occupational, and speech therapists, dieticians, nurses, cardiology attendings, assistant nurse managers, cardiology nurses, and critical care nurse practitioners. It was decided to focus on 4 key areas: holding/kangaroo care (KC), proper positioning, feeding, and appropriate environmental stimulation including cycled lighting and noise reduction.


The CICU is traditionally a high stress environment where the focus is achieving stable hemodynamics, preparing for or recovering from a major surgical intervention, and then deescalating care in order to be transferred to a regular floor. Knowing that considering the long-term developmental outcomes of patients and families in an acute care setting would be a major shift in culture and frame of mind, the developmental care team decided to start with holding and KC. Traditionally, holding your child was reserved for when the patient got "better" and KC was an unheard of practice in the CICU. To get buy-in from key stakeholders, the team first had to prove KC and holding could be performed safely. In 2016, KC was piloted in the CICU, which showed that it could be safely done in patients who were previously considered "too sick" to be held. These patients included those with breathing tubes, chest tubes, arterial catheters, peripherally inserted central catheters, umbilical catheters, pacing wires, and other central catheters. As the study was being conducted, several rounds of education were completed in order to educate frontline staff on KC and the importance of parents holding their children. The safety criteria set forth in this pilot became the safety criteria used to decide whether a patient was not only safe to have KC but also to be held. The discussion of whether a patient is safe to hold or do KC was added to the daily dialogue of medical rounds and has become routine practice in the CICU. The transformation over the following two years was significant. The joy from families when they got to hold their child, as well as the support and encouragement from the medical team, propelled this change forward making holding and KC a commonplace practice in the CICU.


After the success of this pilot and the transition into letting parents hold their children on a routine basis, the interdisciplinary team shifted focus onto the other areas of developmental care. To address the areas of feeding, positioning, and environmental stimulation, the team would need to approach each patient on an individual basis with frequent reassessments. To accomplish this, weekly developmental care rounds were established for all patients 6 months and younger in the Heart Center. During these bedside multidisciplinary rounds, the developmental care team, bedside nurse, and parents reviewed practical ways they could foster their child/patient's development for the week, ensured the appropriate positioning devices were in the room, reviewed importance of cycled lighting and appropriate environmental stimulation, and discussed their current feeding status.


Feeding is repeatedly listed in the literature as one of the most stressful experiences for families after bringing a child with CHD home from a long hospitalization. Providing opportunities to breastfeed or bottle-feed, as well as providing a physiologic eating schedule, has the potential to aid in infants reaching adequate caloric intake without the use of a feeding tube. The developmental care team worked to developed pre- and postoperative feeding protocols and ensure speech therapy was ordered on admission to allow infants as many opportunities for eating as possible.


Returning any amount of normalcy back to patients and their families is a crucial component of any type of developmental care. Parents holding, dressing, and feeding their babies, having periods of time with lights on during the day and off at the night, and having uninterrupted hours of sleep are not only crucial for the developing brain but also allow parents to care for their child in as many ways as possible. This also prepares the infants to eventually go home where these small things will become part of their everyday life.


In a world where 35 000 infants are born each year with CHD, care providers have spent too long seeing their role as merely one of helping patients survive through a hospitalization. With the advances of research and technology, care providers now have the opportunity to grow beyond that and help patients not just to survive but also to thrive. The entire care team in the CICU can positively impact neurodevelopment by providing individualized appropriate developmental care starting at birth. These seemingly small tasks add up to positively impact the quality of life for patients and their families not just while they are in the hospital but also in the months, years, and decades to come.


-Mary Jane Broge, MSN, RN, CPNP-AC/PC


Nurse Practitioner


Pediatric Cardiology and Pediatric Critical Care


St Louis Children's Hospital


St Louis, Missouri


-Lisa M. Steurer, PhD, RN, CPNP-PC, CPN


Research & Outcomes


St Louis Children's Hospital


St Louis, Missouri




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2. Marelli A, Miller SP, Marino BS, Jefferson AL, Newburger JW. Brain in congenital heart disease across the lifespan: the cumulative burden of injury. Circulation. 2016;133(20):1951-1962. doi:10.1161/circulationaha.115.019881. [Context Link]


3. Marino BS, Lipkin PH, Newburger JW, et al Neurodevelopmental outcomes in children with congenital heart disease: evaluation and Management: a scientific statement from the American Heart Association. Circulation. 2012;126(9):1143-1172. doi:10.1161/cir.0b013e318265ee8a. [Context Link]