Sawyer Jane Barrow
was diagnosed at 32 weeks gestational age with Vein of Galen malformation (VOGM). Instantly the odds were against us. Sawyer’s case was immediately sent over to The Children’s Hospital of Philadelphia (CHOP) where she was delivered via c-section at 35 weeks. After delivery, Sawyer spent 2 weeks in the NICU and an additional 3 weeks in the Complex Care Unit with complications unrelated to VOGM. Fortunately, Sawyer did not go into heart failure during those early and vulnerable months. Four months went by, and Sawyer remained asymptomatic until August of 2018. At that time Sawyer developed hydrocephalus, fluid accumulation in the brain, due to the enlargement of the malformation. On August 21, 2018, Sawyer underwent her first embolization where a coil and glue were placed in one of the vessels (feeders) that provided blood to her malformation. At that point, it was determined that Sawyer would not be able to have another embolization again due to the complexity of the tangled vessels. Thankfully, after her first embolization the hydrocephalus relieved itself and no further intervention was necessary at that time.
Over the past year, Sawyer has been followed up with multiple MRIs at CHOP to track the growth of her malformation. In late February it was determined that her malformation had grown new feeders by the thousands, entangling around the thalamus and spinal cord. The doctors at CHOP decided it would be best to start a clinical trial chemotherapy drug since it had already been decided that surgery was not a possibility. After a few months on the medication, another follow up MRI revealed that the chemotherapy medication was in fact not working and the malformation was continuing to grow. At this time we felt it was necessary to explore the last of our limited options available and we reached out to Dr. Berenstein, a neurosurgeon at Mount Sinai Hospital. Dr. B felt that it IS
in fact possible and imperative that we take immediate action to try and embolize her malformation. In the next week, Sawyer will undergo her 2nd embolization and in the following months will have back to back embolizations with hopes that we can shrink her malformation and reduce pressure on her brain. This does not come without risk but if her VOGM continues to grow at this pace, she will eventually regress due to brain damage and it will ultimately be fatal.
The Vein of Galen malformation is a rare arteriovenous malformation that affects the Great Cerebral Vein, also known as The Vein of Galen. This particular malformation is formed when the veins connect directly to arteries rather than connecting vein, to capillaries, to arteries. Because capillaries are missing, this causes a high, fast flow of blood to be pulled towards the Vein of Galen which often leads to congestive heart failure. Other symptoms that stem from the VOGM are hydrocephalus, developmental delays, seizures, brain bleeds and even death. The Vein of Galen affects 1 in 3 million people. The cause of the VOGM is unknown with some speculation that it is genetic. (Source: https://weillcornellbrainandspine.org/condition/vein-galen-malformation)Click here for a video depiction of VOGM
All donations raised will directly benefit Sawyer Jane and the ever growing medical expenses accrued on this journey. We have and will continue to do everything we can to achieve the life that Sawyer deserves, free from pain and illness, but unfortunately it does not come without financial needs. Your donations will help alleviate financial burden so we can focus our energy on our family.
We also look forward to raising awareness of VOGM in hopes that all babies born with this rare blood vessel abnormality will share the same fighting chance at living a long and healthy life. At this time there is very little research on VOGM and therefore there are no specific foundations supporting it; rather it is grouped together with brain aneurysms and vascular malformations. We hope that one day this rare congenital abnormality will be recognized exclusively. On September 14, 2019, we will be participating in the 6th Annual Philadelphia Brain Aneurysm/AVM Awareness 5k
which is put together by the Brain Aneurysm Foundation.
A huge thank you to everyone who has donated or kept Sawyer Jane in their thoughts and prayers. There are no words to express our appreciation.
Keith, Natalie, Liam & Sawyer