Close Follow-up of Former Preemies Keeps Development on Course

Case

Baby A. was born at 24 weeks gestation at the Hospital of the University of Pennsylvania (HUP), a CHOP Care Network affiliated hospital, weighing just 580 grams. She stayed in the intensive care nursery for 159 days before she was discharged home to the care of her parents.

Her course in the Intensive Care Nursery (ICN), under the care of CHOP neonatologists, was eventful. She required ventilator support for immature lungs and subsequently developed chronic lung disease, but was discharged without respiratory support.

Her course was also complicated by a patent ductus arteriosus; necrotizing enterocolitis on two occasions; grade 2 intraventricular hemorrhage; osteopenia; stage 1 retinopathy of prematurity; apnea; and Candida albicans septicemia with meningitis and severe cutaneous manifestations. This last condition was difficult to treat, requiring 42 days of amphotericin, during which she was transported to CHOP for placement of a central line and then was returned to HUP for ongoing care.

At discharge, A. was referred to her primary care pediatrician and to the Special Babies Clinic, the follow-up clinic for preemies discharged from HUP. In addition, A. also required follow-up by Ophthalmology and Endocrinology (bone health).

A. was seen on 3 occasions in the Special Babies Clinic, receiving developmental and medical evaluations. At her first visit, A. demonstrated mild hypertonicity and was referred to Early Intervention (EI) for physical therapy. Because of scarring on her back from cutaneous candidiasis, she was referred to Dermatology. Lastly, as all preterm-born children are at risk for hearing issues, A. was referred to Audiology for a formal evaluation.

During subsequent Special Babies Clinic visits, A.’s growth and development continued to be monitored closely. She had a full evaluation by a developmental psychologist when she was 1 year adjusted age. At this visit, our team agreed A. would also benefit from a special instructor from EI.

At A.’s most recent visit, at age 2 years, she was seen at the now-combined CHOP and HUP follow-up clinic, the Neonatal Follow-up Program, located in the Buerger Center for Advanced Pediatric Care. Her tone is improving, but physical therapy is still merited, as is the special instructor.

To further support her development, the follow-up team made family-friendly recommendations for parent interactions, play activities, reading (books from CHOP’s Reach Out and Read Program were provided), and encouragements for language development. These became part of the ongoing plan for the family and were communicated to the primary care pediatrician as well.

A. had a full evaluation at this visit, the key visit for 2 research studies in which she was enrolled as an infant (Transfusion of Prematurity Trial and Sustained Aeration of the Infant Lung Trial). A. will be followed in the Neonatal Follow-up Program until she is 5 years old.

Discussion

The Neonatal Follow-up Program at CHOP, led by Sara DeMauro, MD, MSCE, follows preterm and high-risk infants throughout the critical first years post-discharge. The program’s mission is to provide ongoing comprehensive care for NICU graduates to support optimal growth and developmental and behavioral outcomes. Further, by providing clinical care, research opportunities, and educational experiences, it aims to teach the next generation of clinicians the needs of this unique population.

A multidisciplinary team of neonatologists, pediatricians, nurse practitioners, developmental psychologists and specialists, social workers, therapists, and clinic coordinators is on hand in the Neonatal Follow-up Program to provide the full spectrum of care. A core set of data are collected at every follow-up visit. To date, this database includes more than 3,700 patients and 7,000 patient visits. It provides a rich resource for assessing care practices and interventions, evaluating outcomes at various gestational ages, and ensuring our team provides consistent high-quality care. The team offers families an in-depth, frank trajectory for their child’s development and growth, making recommendations as needed. Clinicians emphasize adjusted age so that parents understand their child may not be on track if compared to term-baby expectations.

The program assesses outcomes for a host of CHOP-based and national research studies. Its success rate for securing follow-up data for research investigations is consistently >95%. The program is a key component of CHOP’s Chronic Lung Disease Program (see related article) and Pulmonary Hypoplasia Program (see related article) as well as CHOP’s participation in the NICHD Neonatal Research Network.

In addition to the Buerger Center, the CHOP Neonatal Follow-up Program is located at multiple CHOP Newborn Care Network locations: Pennsylvania Hospital, Holy Redeemer Hospital, and Chester County Hospital in Pennsylvania, and Virtua in Voorhees, New Jersey. Lancaster General Hospital will begin a program later this year.

While most referrals are made while babies are still in the NICU, pediatricians can call 215-590-2183 to see if a patient would benefit from an evaluation by the CHOP Neonatal Follow-up Program.

Eligibility assessment for CHOP neonatal follow-up program

All infants: ≤32 weeks gestation or ≤1500 grams at birth

Infants >32 weeks with:

• Neurologic concerns: Grade III-IV IVH or PVL; cerebral infarct; seizures (discharged on meds); meningitis (proven); birth asphyxia/perinatal depression (Apgar ≤3 at 5 minutes), including any infant treated with therapeutic hypothermia
• Cardio-respiratory concerns: PPHN (requiring iNO); BPD: failed O2 challenge @36 weeks, on supplemental O2 or diuretics @ discharge
• Other medical indications: SGA (<3%ile); significant hyperbilirubinemia (requiring exchange transfusion); congenital infections (excluding syphilis)
• Other: By discharging team or outpatient pediatrician’s request; enrolled in research study requiring follow-up; clinic may fill in open slots based on local discretion and depending on staffing, etc.