Ethan Ferdinand Bowles was born in August. A week before birth he was diagnosed with a very rare life-threatening condition called Vein of Galen Malformation (VOGM). VOGM is an abnormal connection between a major vein and artery in the brain and it causes abnormal blood flow with risk of brain injury and heart failure. After he was born, Ethan spent 9 days in the NICU where he developed heart failure. Ethan’s heart was stable enough to be managed with medications and he was discharged home, but with some serious homework; to grow, grow grow! So far he is proving to be a dedicated student! The goal is to make it to the optimal age of 4-6 months before needing the lifesaving surgery on the blood vessels in his brain.

The odds were not in Ethan’s favor at birth. At birth, babies with this diagnosis only have a 30% overall survival rate. Now that Ethan has survived the first few months of life without requiring emergency surgery, his odds have greatly improved. Now with successful surgeries, Ethan has a 90% survival chance and a 70-80% chance of a normal outcome and life without disability. Without surgery, babies start to decline and they typically do not survive this diagnosis. Because this is such a rare diagnosis and incredibly risky procedure, there are only several doctors around the world who are experienced enough and have the technical skills to perform this risky procedure on such tiny babies. Therefore most babies with VOGM have to travel long distances across country or internationally to be seen by one of the few specialists. Ethan will be traveling across the country to Boston Children’s Hospital to be treated by Dr. Orbach and his highly skilled team.

Currently Ethan has 2-3 appointments a week with his medical team. His pediatrician, cardiologist, neurologist, neurosurgeon and neuroradiointerventional doctor are all working together to determine the optimal time for his first surgery. He will likely need a minimum of 2-3 surgeries and possibly many more over the first several years of his life. We are so fortunate that Ethan will be treated at Boston Children’s Hospital with Dr. Orbach. However, the cost of health insurance for Ethan to be treated out of state is… HIGH! The financial burden of Ethan’s treatment is going to be very significant for our family. It is well worth it, though, to give beautiful Ethan the best chance of a successful outcome and a healthy, happy and long life.

Ethan is now three months old and thriving so far. He loves to smile and coo and is getting better at holding up his big head! He is loved so much by his big brothers Teddy and Leon. They are smitten by him and in between their own ninja and dinosaur moves, they take the time to calm down enough to help feed Ethan a bottle, give him a toy to play with or try to make him laugh.

Ethan: Strong, Enduring, Warrior

Ferdinand: Brave, Courageous, Voyager