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On October 16 2022 after a 60 hour labor we finally met our little boy; Avi Brian London. Born at 6 lbs 7 ounces and 20 inches long, it’s hard to believe this guy was 6 weeks premature. It was only 10 days later we were looking at an ultrasound of his head and for the first time heard the term, hydrocephalus.
The next day a MRI confirmed Avi’s lateral and third ventricles in the brain were blocked resulting in the cerebrospinal fluid (CSF) unable to properly drain and resulted in the ventricles enlarging. Three days later Avi had his first brain surgery where the neurosurgeons at MUSC Shawn Jenkins Children’s Hospital were going to implant a reservoir to draw the CSF and release the pressure in his brain. After two months in the NICU, the neurosurgeons determined they would perform another brain surgery implanting a permanent device called a ventriculoperitoneal (VP) shunt. This is a catheter - tube inserted in the ventricles, controlled by a programmable magnetic valve, on the outside of his skull, under the skin, down the right side behind his ear, to his neck, and then to his abdominal cavity.
Our son is 1 out of every 770 babies that develop hydrocephalus, making it as common as Down’s syndrome and more common than spina bifida or brain tumors. We do not know the extent of developmental delays Avi will have as a result. We feel lucky and thankful that the nurse at SMC noticed something wasn’t right. Avi was feeding/progressing up to that point and then started to revert; she suggested an ultrasound.
We would like to raise hydrocephalus awareness here in our community. We want there to be more nurses like Avi's, to be more proactive for early detection. We feel lucky to have found amazing moms themselves in our community to help care for Avi’s developmental needs. He is working hard in physical, occupational, and speech therapy, Monday - Friday. Although his progress is slow there is progress. Our days are filled with therapy, specialist appointments, and weight lifting; Avi is not yet walking.
Avi’s Papap started donating to the Hydrocephalus Association last year and that is how we found the Hydrocephalus Awareness Walks. Although Avi cannot walk yet, we walk WITH him and one day soon we will walk BESIDE him. Please consider donating to help fund research and educational awareness. Hydrocephalus is a life-threatening condition that affects more than 1 million Americans. Thanks to HA’s Research Initiative, there are 12 drugs currently being tested that could have a major impact on people living with hydrocephalus.
Thank you for reading about Avi and hydrocephalus and hopefully it has raised your awareness.
Hydrocephalus Association, Data Entry Division, 9249 S. Broadway, #200-845, Highlands Ranch, CO 80129
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