• Infants with known or suspected genetic conditions that affect brain development

PRO-SLEEP will enroll patients over three years, and there will be a variety of study-related activities over the study’s duration, starting in the NICU and continuing through preschool:

During your baby’s NICU stay

• We’ll observe your babies sleep by recording a bedside video as they sleep. Our experts will use that recording to score different sleep states, namely, Active (often confused with a fussy or awake baby), Quiet and Awake states.
• We’ll track their sleep quality maturation weekly during their NICU stay.
• We also will perform two formal sleep studies (polysomnography) using safe and bedside sensors that record brain waves, blood oxygen saturation, heart rate and breathing. The sleep studies can tell how well the baby is sleeping and if the baby is having difficulty in breathing during sleep, which is quite common in babies born prematurely.
• We’ll measure electrical activity in your newborn’s brain (EEG), the heart’s electrical activity (EKG), and we’ll gauge how well oxygen is traveling throughout your baby’s body (pulse oximetry) during sleep.
• As you baby grows older, we’ll gauge how their brain development is going by taking detailed pictures of your baby’s brain using safe, non-invasive magnetic resonance imaging (MRI) after they come to our NICU. Your baby will repeat the MRI when they reach their original due date (the age they would have been if the pregnancy had continued to full term).
• When your baby is ready to leave the NICU, we’ll gauge their brain function by a bedside examination of their behavior, also known as neurobehavior assessment.

After your baby graduates from our NICU

• We want to understand how well your baby sleeps at home after NICU discharge. Every few months, we’ll ask you a few questions about how your baby is sleeping.
• We’ll also perform a neurodevelopmental follow-up when your child turns 2 years old to see how their little brain is exploring the giant world around them and playing and interacting with it.

You will receive a voucher for study-related parking and $50 via a ClinCard (debit card) for each outpatient study visit (e.g., outpatient MRI) and after each completed neurodevelopment visit.