Newborn Developmental Follow-Up Program at Yale New Haven Children's Hospital at Bridgeport

The goal of the Newborn Developmental Follow-Up Program, founded by Dr. Christine Butler, Assistant Clinical Professor of Pediatrics, Yale University School of Medicine, is to help infants born prematurely to reach their full potential. The program is directed by Dr. Christine Butler and supported by Elisabeth Schneider, LMFT, coordinator of the Newborn Developmental Follow-Up Program. Infants are screened using the IDA Infant and Toddler Development assessment and the Bayley Scales for Development Assessment. The program sees infants born less than 32 weeks, under 3 lbs. 5 oz, with complex medical diagnoses including:

  • Hypoxic ischemic encephalopathy
  • Intrauterine growth restriction – IUGR
  • Intraventricular Hemorrhage (IVH), periventricular hemorrhage (PVH)
  • Meningitis
  • Seizure
  • Neonatal stroke
  • Hydrocephalus
  • Hypotonia or hypertonia
  • Abnormal neurological exam at discharge
  • Neonatal Opioid Withdrawal or Neonatal Abstinence Syndrome in preemies
Newborn Pic
Assessment Picture 1 Web

Assessment Screening

The screening includes a medical assessment which includes a neurological examination and assessment, nutritional assessment to ensure appropriate growth, and most importantly, a developmental assessment to identify challenges with cognitive, motor, language, and social skills. After review, referrals to additional services are made and follow-up care provided over a period of three years to chart improvement in deficits that are identified. Referrals to psychosocial resources are made to support parents and family functioning including social determinants of health screening and emotional support.

Most common diagnosis and referrals include:

Medical: Feeding challenges, Failure to thrive, Cerebral palsy (ophthalmologist, audiologist, orthopedics, gastroenterology and others as needed. Continuous collaboration with pediatrician is always a part of the program)

Developmental: Cognitive, Speech or Motor Delay; Autism (Occupational therapy, speech and feeding therapy, physical therapy)

Psychosocial: Emotional support, Housing, Food/diaper Need, GED/work/immigration

Thanks to support from the Smith Richardson Foundation we have:

  • Patient outcomes include in 2023 approximately 70% of our patients were in the normal range at their final visit and three had only slight language delays but were otherwise typical.
  • We have a patient compliance rate of 96% (average for country is 50%)
  • We have patient attrition of only 3%
  • Patient compliance:
    • Addition of 2-month post discharge visit
    • Addition of 3-year visit to make sure infant is set up for preschool/day care
    • Increased accessibility of program
    • Increased follow up support to make sure referrals are completed and to provide psychosocial supports and social determinants of health

Patient Stories

Twins

In late spring 2020, we welcomed twin girls born at 32 weeks into the NICU.  Their mother was unemployed with four sons and had no stable housing.  Social work and our office supported the mother during her time in the NICU, providing education, resources and support.  We were able to advocate for the mother and assist in her transition to a three-bedroom home prior to the girls’ discharge home.  At that point, our work shifted to supporting the family so that the twins could achieve the best development possible.  This has included a wide variety of interventions, including:

  • Regular developmental assessments
  • Connecting the family with resources that have given them free furniture and developmentally appropriate toys such as puzzles and books
  • Speaking with the mother regularly to check on the babies and provide encouragement and developmental education
  • Informing mother about transportation resources so that she could get to twins’ medical appointments
  • Providing multiple 50 lb boxes of non-perishable food through the generous donation of Al’s Angels

This particular family’s needs were identified partly through the experience of virtual sessions rather than in person visits.  These virtual sessions helped us recognize that the family lacked proper furniture as well as toys.  Recognizing and then addressing this wide variety of needs will, we believe, help their preemies to thrive and develop to the best of their potential.

Grandmom and her little guy

A year and a half ago, a little boy was born 10 weeks early and his parents were not ready or able to attend to his needs.  Their own struggles intervened, and his care was turned over to his grandmother.  His grandmother works full time and provides incredible love and support for him as she juggles getting him to daycare, attending his medical appointments and maintaining her job.  During his last visit with our office, we became aware of just how hard this was for her; she couldn’t easily make an appointment with the specialists because the calls took so long and she would get in trouble at work (when she called during her lunch break, the offices were closed).  She also struggled to get appointment at times when she could get off work and she had already used up 100% of her time off during her grandson’s illnesses throughout the year.  Perhaps most importantly, she realized that her grandson was suffering from significant delays and challenges, but she did not know where to turn or what to do to help him.

Our office spent days coordinating a number of services for the family including setting them up with an autism evaluation with the child study center, connecting them with a higher level of care through Birth to Three, scheduling an appointment with his pulmonologist at a time that grandmother could attend, and also scheduling the toddler for a much-needed hearing test.  This level of support was necessary for both grandmother and grandson to be able to access care so that he could thrive.  The grandmother reached out shortly after her last appointment with a note saying, “thank you so much – I am truly blessed to have you in my life.”