My Condition
I was born with congenital hydrocephalus with a posterior fossa cyst and major brain anomalies which resulted in blindness and severe developmental delays. I was born 4 weeks early due to my mom having pre-eclampsia that caused her blood pressure to skyrocket. The doctors said I would die at birth but at my 1 minute check my apgar was 5 and at my 5 minute check my apgar was 8! Most "normal" babies score an 8! I have recently been diagnosed with another condition call Alobar Holoprosencephaly. We are waiting on a very specialized doctor to make the final diagnosis however my new doctors are pretty sure that is what I have. Its the sporadic form, not the genetic so no one else in my family has to worry much with every having a child with my condition. UPDATE: Sean's diagnosis of Alobar Holoprosencephaly has been reversed. While he has all the traits of the condition, he has additional traits that do not fall into that category... Back to search...
I was born weighing 8 pounds and 5 ounces. Although I was a TINY baby, my head was overly large due to fluid accumulation which made me weigh more. I was 18inches long and had tiny little hands and feet and my preemie clothes were way too big! I had a shunt placed at just under 72 hours of age to help relieve the pressure being caused from the fluid accumulation.
Aside from all the anomalies and conditions I was born with, I done really well for the entire 2 weeks I was in the hospital. The doctors told my mom I would die soon and to just let me stay at the hospital. My mom said no and wanted to take me home so my dad came and we all went home together. I've had some rough patches along the way but overall I do pretty good!
To learn more about me and my current development and daily living you can see the "All About Me" section of this site!
CURRENT AGE: 29 MONTHS
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