Outcomes

As a patient, outcomes can be an overwhelming medical term. In short, we all want to know what will life look like for baby, and our family, in the presence of a fetal anomaly. We also want to know what the expected results will be for any treatments being considered, and what will be the consequences of decisions we as parents need to make.

As we have seen throughout this course, as varied as fetal anomalies are, outcomes also vary widely.

Outcomes depend heavily on these factors and more:

Type of anomaly: which organ, how many systems are involved
Severity: major or minor
Whether the anomaly is isolated, or is part of a syndrome (meaning a pattern of anomalies that occur together)
Timing of diagnosis and intervention, if possible
Access to specialized care

An informed Maternal-Fetal Medicine specialist is usually the person informing a pregnant patient that there is a fetal anomaly, and they should inform expectant parents regarding outcomes and management options.

Given the wide range of outcomes and management of a fetal anomaly, a general discussion is not possible.

It is vital to know that some conditions are amenable to fetal therapy.

Others are best managed immediately after birth at a fetal center with specialized services.

Knowledge of treatment options should be available to all affected families.

NAFTNet, the North American Fetal Therapy Network, consists of 50 member hospitals experienced in providing all necessary information and directing appropriate fetal care.

Currently, open fetal surgery, fetoscopic surgeries, shunts (to relieve blockages temporarily), and EXIT procedures (done immediately after birth while still connected to mother) exist for conditions including open neural tube defects, congenital diaphragmatic hernia, complications of monochorionic twin pregnancies (including twin-to-twin transfusion syndrome), cystic lung lesions, pleural effusions, lower urinary tract obstructions, neck masses, heart defects, and severe swelling.

Fetal blood sampling is less invasive than surgery, and can diagnose, treat or monitor various fetal problems, such as fetal anemia.

Still other fetal conditions, such as an arrhythmia, benefit from therapy administered to the mother.

Fetal centers provide and monitor both invasive and noninvasive medical interventions on behalf of the fetus.

Even when a diagnosis is serious, families and medical teams find paths for support, care, and maximizing quality of life.

Advances in fetal surgery, neonatal care, and therapies have improved outcomes in many circumstances.

Your story is in the process of being written, and we encourage you to have a detailed conversation with your clinical care team.

Your team will include fetal specialists that are experts in your baby’s organ system affected, anomaly, or type of fetal therapy being pursued. If you do not have this type of support today, please reach out to our team of coaches. We are happy to help you find a fetal care center in your area.