Born May 26th, 1996
Our son Daniel had been diagnosed with a vein of galen malformation. I gave birth to Daniel on May 26, 1996, at Stonybrook University Hospital. At my 36th week sonogram it was discovered that Daniel had swelling on his brain and that his heart was beating too fast. It was then decided immediately that I needed to deliver quickly, rather than waiting. Now I’m wondering if I the doctors should have acted so quickly.
When Daniel was born he was 8lbs. 2oz. and looked to his Dad and I as a perfectly beautiful healthy baby, especially considering he was born a month earlier then expected. Shortly after his birth when I was holding him the nurse indicated to me that he was having a seizure and immediately took him from me. After a CT scan it was revealed that he had this condition known as a vein of galen aneurysm. We were told at the time that there was only one doctor in the U.S. who was knowledgeable and capable of performing a surgery on a newborn with this condition, Dr. Alejandro Berenstein, at New York University Hospital. The procedure was very new at the time and not approved by the FDA. My husband and I contacted Dr. Berenstein and begged him to perform the surgery. After he reviewed all Daniel’s CT scans he agreed.
Because of Daniel’s heart condition it was suggested that we transport him by ambulance rather than air ambulance. My husband, a police officer, contacted his PBA, and Daniel was given a police escort all the way to NYU during rush hour traffic. The first time we met with Dr. Berenstein was in a small room with Daniel’s CT scans all around us. To this day I will never get over that overwhelming threat.
On June 1, 1996, Daniel had his first embolization which was we were told successful. Dr. Berenstein was wonderful, compassionate and so understanding. His team of doctors and nurses were unbelievable. Then on June 5th Daniel was to have a second embolization. On our way to NYU we received a call telling us to come right away, that Daniel was not doing well. Once again we were asked to come into the x-ray room and again Daniel’s CT scans were surrounding us. Daniel’s CT scan revealed tremendous damage to his brain. Dr. Berenstein explained to us that the portion of his brain that was damaged was his emotional and behavioral side. The one thing I remember most was being told that he would never tell us that he loved us. Dr. Berenstein asked that we think about discontinuing any further embolizations. It was up to us now to play God, which we could not do. I decided that I could not bear to see Daniel with so many tubes and that it was not fair to him. If God chose to take him then I have no control. All tubes were removed and I was finally allowed to hold my baby in my arms and rock and sing to him. My beautiful little baby boy died in my arms shortly after, he was only 10 days old. My angel got his wings.
I often think if I had not forced a delivery I would have had him until his normal delivery, another 4 – 6 weeks longer.
I am grateful for Dr. Berenstein and his staff for all that they have conquered with this new procedure. We only wish Daniel could have been a good statistic rather than a poor one.
Thank you for allowing me to tell. I recently only had the nerve to get on line to find out if anyone else has had a similar experience. I have gone to bereavement groups, but it feels good to share this and to know we are not alone.
Daniel is missed by us so very much. We think of him always and we will forever
Thank you and God Bless, Donna Bodenmiller