My name is Estefany Carcano I would like to share my story about my son with Hydrocephalus. I am 20 years old and last August my son Ezekiel was born with hydrocephalus. I was 31 Weeks along and had been sick for a day and on the second day I decided to make an appointment with my doctor, (because my face had swollen up, from throwing up the night before).
After checking me she said she didn't think nothing was serious and so she prescribed medicine and sent me home. A day later I couldn't get out of bed, I had a major headache and slept all day til the evening. Then just before I made myself something to eat I went blind! Could not see for an hour or two that's when family members took me into the ER and there I found out I had pre-eclampsia.
Three hours I was having an emergency c-section, I think it was because of the medicine, I wasn't worried at all. The next morning the doctors came into my room and told me all about what was going on, being so young I didn't know what to do but cry and ask God why me?
Instantly God replied but it hurt deeply because I had never heard about hydrocephalus, and all I heard was nothing but bad news. My son was transferred to another hospital for surgery a week later. Two days after that he had surgery for a VAD (Ventricular access device). He also had a hemorrhage grade IV and so nurses took out blood and fluid daily for a month, because he was 3pounds 6ounces when he was born. He was in the NICU for 2 Months.
At the beginning of the second month he was scheduled for surgery to have a shunt placed but when surgeons saw his MRI they said everything was stable enough, not to have surgery then. Now Ezekiel is 7 months old he is an amazing baby and has not had surgery for shunt. But at his last MRI they said if his head grows by May 1st he will need surgery.
There have been times I feel so alone, and I wonder what Ezekiel will be if there is any hope for normality? And that's how I found your organization and would like to make people more aware of hydrocephalus in my area.