Dr. Alejandro Berenstein:
Michelle Sorscher, Clinical Coordinator
Dr. Darren Orbach:
Kristen Nevins, Program Coordinator (free second opinions must be scheduled through Kristen Nevins)
miracle Flights - 800-359-1711 free flights
Angel Flight Soars 770-452-7958
Contact Delta and other airlines directly and ask for Medical Emergency Discounts (usually a 10-15% discount and can be changed without fees)
The Ronald McDonald House provides housing for families needing to travel for their child’s medical treatment.
Many children with Vein of Galen Malformations (VOGM) travel for treatment due to a lack of experienced providers. The VOGM Support Network raises money to offset travel costs when travel is required for treatment. Treatment includes, but is not limited to, angiograms, embolizations, endoscopic third ventriculostomies (ETV), shunts, and experimental treatments for VOGM related complications.
New fetal clinical trial for Vein of Galen malformation
A multidisciplinary group of physicians at Boston Children’s Hospital and Brigham and Women’s Hospital, under the leadership of Dr. Darren Orbach (neurointerventional radiology), has developed a fetal interventional procedure for the treatment of vein of Galen malformation in utero. The goal of the procedure is to significantly diminish flow through the malformation before birth. The physicians have significant experience with vein of Galen malformations and have been worldwide pioneers in the development of similar fetal interventions for congenital heart conditions. While many of our vein of Galen patients do very well with conventional treatment after birth, there remains a significant fraction who will develop severe symptoms within a day or two after delivery, and this subgroup has a high risk of morbidity and mortality, 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, and the new fetal intervention is aimed specifically at this group. The intervention is being offered as a clinical trial, with the aim of assessing whether the fetal intervention is safe and whether it improves prognosis in terms of survival and neurocognitive development. Interventions will be performed at Brigham and Women’s Hospital by a team of physicians from both institutions; the Brigham and Women’s team is led by Dr. Louise Wilkins-Haug (high-risk maternal-fetal medicine). Candidates for this intervention must have in utero diagnosis of vein of Galen malformation, and will be assessed at the Boston Children’s Hospital Maternal Fetal Care Center for appropriate fit for the trial. Interested patients should contact the Maternal Fetal Care Center at Boston Children’s Hospital, at 617-355-6512.
Cerebral Palsy Guide is a national support organization dedicated to educating individuals and families about cerebral palsy. They strive to provide answers and guidance to ensure that families receive the assistance that they need to help improve their overall quality of life.