He has had 16 angiograms, 9 embolizations, 1 bleed, 1 stroke, life flighted twice ,seizures and countless MRI, MRA & CT. My son was dx @ 13months of age with Vein of Galen malformation(VGAM) he had heart failure at 14 days old and with something being wrong with his heart, they treated it and never looked back. VGAMs are either found in utero or the first few weeks of life. It causes hydrocephalou
s and heart failure. I had a perfect pregnancy with him, he was the only pregnancy I carried full term. However, he was the furthest from the healthiest. We spent his 1st yr of life in and out of the hospitals. He had a very low immune system, so what ever bug his siblings brought home from school he caught. At 13months of age my baby boy was fighting bacterial meningitis, before they can do a spinal tap on a child they have to do an CT scan. Ill never forget this day in my life. Brodey was asleep in his hospital room. As the room became filled with family, I started to pace the halls waiting to hear the results of the scan. I remember seeing about 5-8 Drs swarm the nurses station. All I could think is how sad ,some little baby must be very sick. I walked back in the room to check on my lil’ man. Next thing I know they all come busting in our room. When the words came out of there mouths I felt as though I was in a horrible nightmare. The Akron children’s hospitals neurosurgeons informed us that that hospital was not educated on his dx and at that time they only knew of 5 hospitals that treat what he has. They set us up with Dr Hopkins in Buffalo, N.Y.. We meet with Dr. Hopkins and his team in 2002. However, we where not able to have any embolizations done for they found another complication. 15 months old, Brodey was diagnosed with lupus anticoagulant a blood clotting disorder. They sent us back home to have a Hematologist look at and treat him. Before he was even treated the VGAM started to bleed. That scream from a child, no mother should have to endure. I rushed him to Akron children’s not knowing what the hell was happening. After the lengthy ER visits and trying to get those Dr. to communicate with Dr. Hopkins was very unpleasant. They did a CT scan the doctors told me everything looks as normal as it could, they said and sent us home. Brodey, at this point is knocked out. I thought it was due to all the screaming that he just plain exhausted himself. Its about a 40 min car ride home and still no action from lil’ man in the back seat. I got home and called Dr. Hopkins told him there is just something not right. I was called a minute later telling me to get my son back to the hospital his VGAM is bleeding. The trip up there was a little shorter if you get what I’m talking bout. With Drs, nurses, Chaplin, and security waiting for me to get him there. With the grace of god the bleed stopped. Dr Hopkins and his team do not know how it happened, I do. He was stabilized and life flighted to N.Y. They kept Brodey in the step down unit amazed at how well he was doing. After a week of no signs of another bleed, his 1st angiogram embolization took place. Brodey had a hard time coming out of the anesthesia, vomiting non stop and started to run a fever. He spent days in Buffalo Children’s Hospital PICU. After a couple of days he was back to his little amazing self. The nurses in the PICU just ate him up! He was sent to a step down floor for a couple of days and we where sent home. He did so well they wanted the next embolization done in 6month. I am told that by the time they found brodeys VGAM it was very extensive. It would take multiple embolizations to close it off. After his 2nd angiogram embolization the same events happened. He vomited non stop and ran a fever. After a day or two he was fine. They sent us home. However, I noticed his recovery at home to be a little different. Being left handed he used it for everything. Eating, drinking, throwing balls I noticed his use of it had been going down. Called up to NY to just hear I wasn’t being paranoid they told me to take them to Akron children’s and have a MRI done and be evaluated, they would call and arrange it. For they knew the problems I have had with this hospital. Please do not get me wrong, I love Akron children taking care of my son when it has NOTHING to do with his VGAM. We arrived at 9am at this time Brodey was only showing slight signs of a stroke. We had the MRI done at 1pm, still no evaluation from the chief of neuro. Now he is starting to drag the left leg a little. 4pm The Dr. finally came to tell us the results and evaluate him.. In the hall way none the less! Tells me that he doesn’t see anything different on the film. However, he is going to keep Bro for observation. 5pm we get a room meet our nurse order dinner they start Brodey on some steroids for the inflammation the Dr believed was the cause!?!? I was never told this at his “evaluation” . I had the nurse call this Dr. so he could see what was happening. 630pm Brodey is not able to feed himself he has tremors in his left hand n milk was flowing out the other side of his mouth. The nurse calls the Dr again this time he needed to come now and evaluate this boy he is declining. He sent his nurse to see him. I am on the phone with DR Hopkins, his left pupil was fixed and not dilating. No one is doing a damn thing about it. With in 45min my son was life flighted to buffalo children’s hospital. We found Brodey was having a massive stroke. I had to answer questions and sign papers no mother should have too! After days in PICU my baby boy was awake. He bounced back faster then any one of us could hoped for. He pushed him self to the point of his own anger. His left side had some paralysis so his walking and independeced was stripped from him, he was not taking that lightly. After tons of physical therapy, and our golden retriever he began to walk. Speech therapy, he just graduated from in 2010. He still recievce ocubational . After 9 embolizations they were able to close off the feeders to the VGAM. With the VGMA so close to the main vein they could not embolize it. Brodey had his first dose of Gamma Knife radiation. A year later we found out it worked!! The VGAM was completely closed off!! We were ecstatic. Brodey still had some dificits from his stroke and the radiation. We thought we were in the clear. Brodey was having a bad winter, he couldn’t stay healthy. He had the crop, phenomena, flu…. With all these illnesses he had a high fever, Brodey had a seizure. For now that has been his only one. Thank the lord! Three years after his radiation I noticed my little man was starting to not look and act so well. I called Dr. Hopkins and told him of my concerns. Brodeys headache were getting pretty bad, he was having blurred vision, and TIA’s. He told me to get him up to him and they would do an angiogram. Sure enough there was another malformation. This one lower in the mid brain then the last. So no embolization could help us. The only choice we had was another dose of Gamma Knife. This dose stronger then the last left brodey with even more memory loss. When brodey woke he could not tell me his birthday, his last name, what 2 plus 2 was. These all being easy questions for him for now he was eight years old. Dr. Hopkins was called in eveluate him. They rushed him done to have an CT scan thinking he was having another stroke. Thank the dear Lord they were wrong, However, this ment it was another deficit he would have to over come. When we went for yearly angiograms to see how this malformation was doing. With Gamma Knife it takes up to three years to work. So even though these angiograms showed this malformation was still active there is nothing they can do. With the radiation taking this long to possibly shut this down we also can not have any more treatments for three years. On the third year check up an angio showed the radiation did not work. VGAM are blood feed, meaning as your heart pumps the blood to your brain and through that malformation it as multiple opertunitits to grow. Even though the Gamma Knife did not shut it down, it also did not grow. The neuro team meet about Brodey with all he had been through with the countless CT, MRI,MRA and angios done on him they decided to give him a year of no treatments. That brings us up to today, September 23 2013. I will be bringing Brodey to NY tonight. He has a Dr. with the neuro radiologist for eveluation. Brodeys short term memory has been getting worse. He will also have another angio ,this being his 16th , done to see if anything has changed from last year. This will also give them the conclusion of if he is a canidadte for antoher dose of Gamma Knife radiation. I ask for anyone that reads this please say a prayer for my little warrior and share is story. I know the dear lord hears our prayers and know Brodey is not done with his story 10-9-14 just wanted to update. Brodey has now had his 17 angiogram it was deemed inoperable. we decided to go ahead with a third dose of Gamma knife. he had his radiation surgery on Dec 3, 2013. this dose was larger and stronger.. which has caused problem almost immediately. his brain began to swell and fill with water and double vision began. to add to his list he now is battling hydrocephalic. In may he ended up having to have a tapping chamber into his head. this way if he gets in trouble HOPEFULLY the docs here will drain it till we get to NY.
