What is the NICU Neonatal Follow-Up Program?
The mission of the NICU Neonatal Follow-Up Program is to continue to provide care for graduates of the Neonatal Intensive Care Unit (NICU). The follow-up team consists of:
- A medical director
- Developmental pediatrician
- Neonatal/pediatric nurse practitioners
- Social workers
- Medical assistants
- Rhode Island Parent Information Network (RIPIN) parent resource specialist
- Data entry personnel
- Data analyst
What are the referral criteria?
- Infants who were born prematurely (less than or equal to 34 weeks gestation).
- Infants with birth weight less than 1,500 grams (3 pounds, 5 ounces).
- NICU infants of all weight groups and gestation with a variety of complications including:
- Intraventricular hemorrhage (IVH)
- Bronchopulmonary dysplasia (BPD)
- Severe intrauterine growth retardation (IUGR)
- Stroke, meningitis, or neurological abnormality
- Congenital malformations
- High-risk social environment
- Infants discharged on cardiorespiratory monitors.
Who can make a referral?
Referrals come from:
- NICU discharge planners
- Private practitioners
- Early intervention
- Home health care providers
What types of care/services are offered through the program?
The follow-up clinic provides medical and neurodevelopmental management for graduates of the NICU and maintains a database of outcomes.
At each visit, the child will receive the following:
- Complete physical exam, including growth parameters
- Complete neurologic exam
- Nutrition evaluation and recommendations
- Standardized developmental exam assessing:
- Speech and language
- Fine motor skills
- Immediate feedback and recommendations
- Coordination of care with primary care practitioner
Why is it important for my baby to come to this clinic?
Babies cared for in a NICU may be at risk of early medical or developmental challenges or delays. Babies who were born early and some full-term infants are still recovering when they go home. They may have difficulties with feeding, growing steadily, respiratory problems, development, and behavior. This is especially true if they were premature, were very sick at birth, or needed oxygen or other support for a long time.
We support all babies by identifying problems as early as possible and providing treatments and therapies to promote and support their development and improve outcomes.
How long are babies followed in the program?
Visits may be scheduled from birth to school age as indicated. Standard follow-up is for five years. The duration of each visit will depend on the age of the baby - early visits are usually one hour in length. When the baby reaches a corrected age of 12 months, developmental testing will be done at each visit - this will extend the length of the visit.
How are families involved in the program?
Families bring their children into the clinic for comprehensive multidisciplinary assessments and receive detailed feedback and recommendations. Social workers are also available to assist families as they seek out services in our community for their NICU graduate. Families are also able to meet with a family resource specialist; a former NICU parent who is able to provide support, connection to resources and assistance navigating the health care system.
Is there a measure of success? If so, what is it?
Our success is making certain that families are linked to all of the support services they need after the baby is discharged from the hospital. Secondly, the research studies we have participated in have identified interventions - such as surfactant, antenatal steroids and breast milk - that have contributed to improved outcomes of special NICU babies.
How has that changed over the years?
In 1974, our smallest survivors were born at 27 to 28 weeks of pregnancy. Today, we have many very tiny survivors born at 23 to 24 weeks pregnancy. The numbers of twins and triplets has also increased dramatically so that about 25 percent of babies born weighing less than two pounds, three ounces are now multiples.
Is this program unique?
Currently, it is recommended that all tertiary care centers with neonatal intensive care units have follow-up programs to assess outcomes of their graduates. Women & Infants Hospital has one of the oldest continuously running follow-up programs in the country.
What is the future for neonatal follow-up?
We will continue to provide state-of-the-art, coordinated, family-centered care and support, and to monitor the neurodevelopmental outcomes of our NICU graduates.