My son Victor is now 14 months old. I had a full term pregnancy, and was induced at 39 weeks because the baby was so large. He was born 8 pounds 8 ounces, and had apgars of 9 and 10, a normal vaginal delivery.
Victor was a terriffic eater, but didn't seem to be growing very fast, he was always VERY hot, and he also had a huge soft spot on his head. I finally decided to ask the doctor when that "soft-spot" would "close up" at Victors four month check-up.
One thing led to another... a CT scan, four days after talking to his pediatrician, led to a diagnosis of:
CHF (congestive heart failure)
Hydrocephalus
Heart Murmur
Intracranial AVM, which includes the Vein of Galen (10x10x4cm) about four inches in size.
Enlarged Liver
Missing Skull Bone
Victors head size was off the growth charts, and his weight and height were at the 5%tile of the growth chart. Victor was so small that his chances were 50/50 to survive embolization.
The doctors felt that if we could treat the heart failure, and get Victor to grow bigger that his chances would be greatly improved. And they would reevaluate when he was a year old. Victor had a feeding tube installed, and we went home.
At Vics one year MRI, the avm had shrunk of its own accord, it is now about (3x4x3cm) one inch in size. No embolization at this time, if the avm wants to shrink on its own the docs are willing to be patient.
Victors one year birthday was November 7, 2002, and his next MRI will be March 7, 2003.
At this time Victors heart is back to normal size, and the heart murmur is gone. His liver is back to normal size, he is off all heart medications, and is being weaned off night feeds (g-tube). His skull bone started growing to cover the opening in his head and what was an opening the size of a tennis ball is now about the size of a marble.
He has no obvious developmental delays... He walks, says mama, da, book, up, bye-bye, and climbs up and down stairs all the time. I strongly believe that God is working on Victor, and I couldn't ask for a better doctor.
I have been led to Dr. Berenstein, through much research and hope to have him evaluate Victor, and finish up where God leaves off. :-)
Victor is still a very small boy... weighs only 19 pounds, and is 29 inches tall. I have heard that these things can stunt growth, but Joe and I are not tall.... so maybe this is just genetics.
I will update after the March MRI
Thanks for this site, it is so comforting to hear from parents of children with this problem. Children have very unique concerns, not at all the type of experience an adult with an avm goes through.
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