Research & Innovation | Fetal Intervention for Vein of Galen Malformations

A vein of Galen malformation (VOGM) is a type of rare blood vessel abnormality inside the brain. Left untreated, it can cause severe problems and may even be life threatening. A multidisciplinary group of physicians at Boston Children’s Hospital and Brigham and Women’s Hospital is evaluating a novel interventional research procedure for the potential treatment of VOGM while your baby is still in the womb. This physician team has significant experience with VOGM and in the development of similar fetal interventions for congenital heart conditions.

What is the fetal intervention?

The goal of the research procedure is to significantly diminish flow through the malformation before birth. While many of our VOGM patients do very well with conventional treatment after birth, a significant number will still develop severe symptoms within a day or two after delivery. This subgroup has a high risk of illness and death, even with expert care. We have developed a method, based on fetal MRI scans, for predicting which fetuses are likely to have this kind of aggressive clinical presentation. The new fetal research intervention is aimed specifically at this group.

What is involved?

This new intervention is now being offered as a clinical research trial, with the aim of assessing whether it is safe and whether it improves prognosis in terms of survival and neurocognitive development. It will be performed at Brigham and Women’s Hospital by a team of physicians from both institutions. Dr. Darren Orbach (chief of Neurointerventional Radiology and co-director of the Cerebrovascular Surgery and Interventions Center) will perform the brain embolization, while the Brigham and Women’s team is led by Dr. Louise Wilkins-Haug (division director of Maternal Fetal Medicine and Reproductive Genetics).

Who is eligible?

Candidates for this intervention must have in utero diagnosis of VOGM and will be assessed at Boston Children’s Maternal Fetal Care Center (MFCC) for appropriate fit for the trial. Interested patients should contact the MFCC at 617-355-6512 or email MFCCreferrals@childrens.harvard.edu. More information about the research intervention and the potential risks and benefits will be provided at that time.