The NICU-Cardiac Neurodevelopmental Program (NCNP) at Ann & Robert H. Lurie Children's Hospital of Chicago evaluates and cares for children from birth to adulthood. Co-Directors Raye-Ann deRegnier, MD, and Kiona Allen, MD, lead a multidisciplinary, clinical team that cares for children who were born prematurely, have had medical complications, required surgery or have congenital heart disease (CHD) — starting in the inpatient setting and continuing throughout their lives.
The NCNP at Lurie Children’s has the capability to evaluate and monitor the development of children long-term from birth to adulthood. Our team organizes care ranging from inpatient through outpatient settings, which allows us to get a head start on family education and provide resources and therapies that may improve future outcomes. Since it was founded in 2002, our Early Childhood Clinic has evaluated and supported thousands of young children. Thanks to our expansion in 2017, we are one of only a few programs in the United States with a robust Child & Adolescent Clinic that both continues the work of our Early Childhood Clinic and also provides new evaluations for older children who may have been missed earlier in life.
Most importantly, our school-age clinic offers an education liaison who serves as an advocate for our patients and their families. With this support, families do not have to navigate the educational system alone.
Our Inpatient Care
Our NCNP multidisciplinary team is involved in the care of inpatients in both the Regenstein Cardiac Care Unit (CCU) and Neonatal Intensive Care Unit (NICU). Recognizing the effect of a long hospital stay on a fragile newborn with prematurity or complex medical conditions, our team provides extensive neurodevelopment and psychosocial support while these children are still in the hospital. Physical therapy, occupational therapy, and speech and language therapy services are available to support patients and partner with families beginning shortly after they arrive in the CCU and/or NICU.
All high-risk older patients also receive school support from our teachers in partnership with our hospital volunteers, child life specialists and social workers. Patients on the unit are reviewed in multidisciplinary rounds weekly, incorporating all the various members of the care team to ensure developmentally-appropriate care is provided throughout the hospital stay. For extended-stay cardiac patients who are school-age, our inpatient education staff partners with our outpatient NCNP education liaison to ensure continuity of school support. Together, they help facilitate a smooth transition back to the school setting.
Our physical therapy team also partners with our inpatient cardiac rehabilitation team to ensure patients are staying healthy and strong despite their prolonged hospitalization.
As they get closer to going home, inpatients are screened by clinic staff for NICU and American Heart Association (AHA) high-risk criteria. If eligible, patients are referred to NCNP and families are contacted prior to or shortly after discharge to schedule their initial appointment in our outpatient clinics.
Our Outpatient Care
As research shows, high-risk NICU graduates and children with complex heart conditions are at a greater risk for neurodevelopmental issues when compared to healthy children. Therefore, ongoing specialized developmental care for children in this population is important throughout childhood and adolescence. Our NCNP team provides this support and care across the main hospital campus and our Outpatient Center in Lincoln Park.
Many of these children experience one or more mild to severe deficits across a range of areas. The NCNP seeks to help with:
Delays in fine and gross motor skills
Difficulties with speech and/or language
Feeding or nutritional problems
School difficulties, such as problems with reading, writing and math
Attention, behavioral and emotional problems
Problems getting along with friends and family
Issues with task management and organization
In addition to referrals from the inpatient setting, we screen all cardiac outpatients for eligibility to the NCNP based on the AHA high-risk criteria. At the first evaluation, our team will assess and identify patients’ developmental strengths and vulnerabilities. Since some challenges may not emerge until later in childhood or adolescence, NCNP care providers will work with patients and families to perform periodic assessments at key points in the patient’s development. At each NCNP evaluation, our team will partner with families to develop an appropriate plan of support.