Supporting Families Through Prenatal Diagnosis of a Fetal Brain Anomaly

Our Fetal and Neonatal Neurology/Brain Protection Program is focused on optimizing early diagnosis, prognosticating developmental potential, and offering longitudinal management where needed for critically ill neonates both in utero and after birth. The aim of the program is to provide comprehensive care and facilitate the developmental potential of children identified in utero with:

• Neurological malformations or acquired injury (brain and/or spine)
• Cardiac malformations
• Other associated congenital malformations/genetic disorders
• Other critical illness having an impact on the developing brain

The impact of the diagnosis of a congenital or acquired fetal brain anomaly on the maternal and family experience during pregnancy is profound. Many families who are referred to us for a consultation or second opinion are extremely stressed, having already been told that their child’s diagnosis may be devastating. Our Fetal Neurology specialists are neonatal neurologists trained in fetal imaging and prognostication who meet with families in the prenatal period and establish a relationship and a support system that will be there for prenatal care and throughout their child’s lifespan. The same team members cover fetal neurology consultation, postnatal care in our Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit (N/IICU), and follow-up outpatient clinic care. This establishes a longitudinal continuity of care and provides much needed emotional and mental support to families going through a very stressful time.

Advances in fetal ultrasound and fetal MRI help with early identification of abnormalities of the fetal brain and management of vulnerable neonates in the critical window period of brain development and maturation. Our fetal neurology specialists collaborate closely with the Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment to provide a detailed diagnosis and determine the implications for the fetus and the family, monitoring needs for the remainder of the pregnancy, the delivery type/timing/location (C-section vs. vaginal delivery), and the postnatal care in the newborn period and throughout childhood.

Postnatal care may require the involvement of other specialists (neonatologists, neurosurgery, endocrine, genetics, cardiology, or other specialties as indicated) or specialized investigations. The care and planning evolves as the pregnancy progresses, and may involve complex multidisciplinary decision-making and challenges. When appropriate, delivery will be planned in our Garbose Family Special Delivery Unit (SDU).

Our specialists help answer immediate questions from parents regarding diagnosis and prognosis (what does my child have, why does my baby have this, what does it mean for my baby, or can this happen again). We also plan for the next steps, focusing on the potential long-term implications of such neurologic diagnoses, and develop individualized strategies to support children and families with any challenges they may face. The medical literature related to prenatally diagnosed neurologic conditions frequently describes what happens to children in the first few years of life. But parents also want to know how their child will do over the long-term, how they’ll do in school, and what their quality of life will be. Our team follows children through school age and uses the knowledge we have gained through this experience to help families navigate their child’s life to see that they thrive.

We have seen that there is a broad spectrum to how children with an in utero diagnosis of a brain malformation or those who experience brain injury due to a complicated perinatal course progress through childhood. We understand there can be a lot of confusing information available about neurological conditions and not all the questions families have can be adequately answered in the prenatal or perinatal periods. We are committed to supporting families and learning from these children to improve early interventions and provide them the resources for an optimal neurodevelopmental outcome.

For newborns who require surgical intervention or specialized support, birth in our SDU offers immediate access to care with the ultimate goal of optimizing neurodevelopment. Our monitoring and diagnostic practices are standardized for all patients to facilitate both subspecialty care and research.

The overarching goal of our program is to optimize the care for the complex child with brain malformation/insult/injury, maximize neurodevelopment in early infancy and provide a smooth transition into adulthood. Most importantly, we want families to be reassured that our team of specialists is always there for them as they see their children blossom into young adults.