Born April 21st, 2003
Our son, Dean, was diagnosed was a Vein of Galen Malformation in utero. I was 29 weeks pregnant at the time. I had an earlier ultrasound but nothing showed up out of the ordinary. I started calling all around to find the right doctor to see us. A pediatric neurosurgeon and a pediatric neurologist at University Hospitals practically fought over seeing us because this condition was so rare. We soon had a fetal MRI and they confirmed the baby had the VGM. I was so devastated. They also told us Dean had no heart issues and his brain looked good otherwise.
We had ultrasound after ultrasound. We had them weekly for the remainder of my pregnancy. Dean’s heart was showing some signs of wear but it was doing well. His brain continued to show no damage. We were very hopeful.
We talked to all the doctors in town who would or could perform this embolization. We were told because his heart was struggling that he would probably need it right away. The doctors here in Cleveland, OH had never done this on an infant before so we were a bit skeptical. We did a lot of research and decided we would have the baby delivered in NY and have the embolization at Beth Israel with Dr. Berenstein. We kept hearing he was the best. To make sure Dean was actually born in NY we went there 3 weeks before my due date. We met my new OB and all the baby’s doctors. I was induced 2 weeks before his due date, April 21 at St. Luke’s Hospital. The delivery went well. He was amazing. He was beautiful! They rushed him away and said he was doing fine. But, they had to transfer him to Beth Israel the next day. He handled the move all right, but over night he started deteriorating. They rushed him into surgery the next day and after 7 hours he decided enough is enough. His lungs would no longer take in air. He was so little and had already been through so much. The doctor did say that he had a very large amount of feeder veins and that is why the surgery would not have helped too much. They could close off only so many in the amount of time they had. Dean lived for only 2 days.
It was hard to leave the hospital without him. We had to get on a plane and go home with an empty baby carrier. We do feel fortunate to have had our time with our son. Even though his life was short it was his and it meant the world to us.
If anyone would like to contact us my email address is Ltcleveland@hotmail.com