Born August 6th, 2001
Matthew was diagnosed on August 20th, 2002 with a Vein of Galen Malformation (VGM). Following is his story & information regarding this malformation.
Matthew was born on August 6th, 2001 with no complications. He was put into NICU due to hypoglycemia and to be monitored incase of sepsis. For the next 11 months, he would be completely healthy & on track w/his development schedule. However, on July 17th, he was brought to the pediatrician because he looked like he was having stomach pains. He was diagnosed with the flu. A week later, he was brought in again, as I noticed he was losing his balance often; wasn’t cruising as he did. He was diagnosed with an ear infection. Two days later, he began to have seizures. Little short jumps, exactly like the Moro Reflex infants have. A week later, on his first birthday, he was again brought into the office, still nothing wrong. Ear infection was gone, and the doctors couldn’t find anything wrong, and no one had seen the seizures besides immediate family. They had decided to give me the name of a neurologist, and helped me to get an appointment as soon as possible.
On August 16th, 10 days after Matthew’s first birthday, we went to the neurologist. There, they scheduled us for an EEG, and was setting us up for an MRI. (No professional had seen any seizures yet.) That afternoon, Matthew was napping when I looked over at him, and his eyelids were open & his eyes were rolled up. He was then rushed to the ER, where they did a few blood tests, and finally, a CT Scan. There was something there, but they didn’t know what. We were then transferred to the other hospital site, where they still weren’t sure what it was. (Possible enlargement of the pineal gland?) They decided to transfer us to The Hyman-Newman Institute for Neurology and Neurosurgery Beth Israel Medical Center, Singer Division. Once we arrived there, Matthew was immediately started on medications to stop the pressure in his brain, along with medication to stop/slow the production of his cerebral spinal fluid. He was also given a video EEG for 48 hours. It was determined, he was having seizures (which were getting worse – he started to have staring spells/seizures as well). He was given an MRI, which determined he had a Vein of Galen Malformation. Matthew does not have the text book case of the Vein of Galen. He did not suffer from any cardiac problems, although the faster flow could be noted. They are saying this is the reason it was not detected until after his first birthday.
He had an emergency angiogram and embolization on the 22nd of August. The Vein of Galen was able to be shut off. However, during the angiogram, they found that Matthew’s sinus veins were clotted.
Recovery went well, and Matthew made great progress. He was released from the hospital 13 days after his surgery. He is currently on seizure medications and a blood thinner (for the clotted veins). He has a follow-up appointment on the 24th of October. When you look at Matthew, you would never now he had any of these problems. He is a happy, VERY active 14 month old little boy.
Matthew had his follow-up MRI on October 24th & visited all his doctors. They are all very pleased and amazed with his recovery & progress. At that time, they would like dropped his blood thinner down from 2x a day to once a day. He will continue to be on seizure medications until the clotting is taken care of.
As of January 16th, 2003, we are done with the blood thinners! Matthew had his 2nd follow-up MRI & visited with his doctors. Everything is great! HE will remain on the seizure meds for at least another 2-3 months. We don’t need to go back for another MRI for at least 6mos to a year! Yeah! We couldn’t be more thrilled.