Born January 24th, 2008
Jan 23, 08
I was 35 weeks pregnant when My Dr. sent me for an ultrasound to check the size of the baby as I was measuring 39 weeks at 35. During the scan they noticed that his heart was enlarged and they saw something out of the ordinary in his brain. I knew something was really wrong once they called the radiologist into the room. He informed me that this looked like a Vein of Galen aneurysm however he would talk with my Obstetrician to make decisions on what the next steps would be. I was sent to her office immediately when she informed me that I was booked for an MRI scan right away. Once they completed the scan they decided that the baby was going to be delivered the next day by c-section so that they could proceed with tests on baby rather than in utero. The Dr’s transferred me that night to Victoria Children’s Hospital where the neurosurgeon was located for the delivery.
Jan 24, 08
We were in meetings throughout the night regarding information about this aneurysm and it sounded as though there was a good chance that doing surgery would have a good outcome as long as that is all that was going on. Once the surgery was done Riley’s heart would go back to normal and we would be well on our way to recovery.
They sectioned me at 12:30 and he was born at 12:57. He cried for only a second before they disappeared with him to stabilize him. After recovery we went to meet him and all of my hopes were grand, as he looked so healthy even hooked up to all the machines. We had more meetings throughout the evening as his condition was deteriorating.
Jan 25, 08
We wait…. eventually Dr’s start coming in to speak with us. After numerous tests we were informed that Riley was in kidney failure, heart failure and when they received the MRI results it was devastating to hear that more than 3/4 of his brain was damaged from seizures during pregnancy and from loss of oxygen and blood supply that this aneurysm had been taking from other parts of the brain. They told us that even if he was stable and even if he survived surgery, it would be only a short time that he would live. At this time his lungs, kidneys and heart were in failure. We had to make the decision that night whether or not to proceed with him in pain or let him go. He would not have had the chance for a normal life even for a day so we decided that Jan 26, 08 we would let him go. We named him today and decided on a meaning rather than a name. I researched the Internet and some baby name books and found Riley, meaning brave one.
Jan 26, 08
I had hoped still that someone made a mistake. I was happy with my son hooked up to machines as long as he was still alive and with us. I enjoyed my evenings in the critical care unit alone with him, touching his little toes and talking to him. My husband dealt differently and just wanted answers, to deal and to be on the road to emotional recovery. We went to the unit at around 12:30 lunch hour. Spent some time talking to the nurse and looking at Riley from a distance. We held him for a while with his machines and then it came time for us to take him off support and hold him, as parents should be able to hold their son. He had gasped for air a few times and then passed peacefully in his father’s arms at 1:43pm. It was extremely hard to leave the unit and I still don’t know how it all happened. I don’t know what I am supposed to do with myself other than look at pictures, research, cry and wait for time to heal. I go to bed thinking that tomorrow I will wake up and feel just a little bit better, but when I wake and I am not better it is a matter of getting through one more day.
We will miss Riley so very much and know that there are no answers as to why this one in a million problem was given to Riley and our family. This Vein of Galen aneurysm is so rare that the Dr.’s can only say one in a million at the most. The Children’s Hospital hasn’t seen this in over 30 years and told us that this would have formed prior to finding out we were pregnant. Riley’s brain was developing normal but without capillaries from the arteries to this vein, which is where things went downhill for him.