Our daughter’s condition is called hydranencephaly. This is a rare condition and occurs in less than 1 in 100,000 births in the United States. In hydranencephaly, an event occurs, usually in utero, that causes the destruction of the brain, in its place is excess cerebrospinal fluid. Our daughter has a brain stem and I would guess less than 5% of her cerebral cortex. Statistically, children with her condition do not survive past their first year.
However, our daughter is now 2 years old. In living with this condition for a while and interacting virtually with many families like ours, I believe that statistic is inaccurate. Many of the things that the doctors said our daughter was incapable of have been proven wrong. We were told she would be blind, but she sees and reacts to light, people, and is able to track with her eyes. We were told she would be deaf, but she likes to be in noisy places and can differentiate the voices of the people she loves. We were told she wouldn’t see her first birthday, but that’s long since past. We were told that all we could do was make her comfortable until she passed, but here she is, living, loving, and thriving. She has a personality, a sassy little attitude, and she is a dearly loved member of our family. We’ve gotten to do far more with her than just keep her comfortable.
However, we do know that this is a life-limiting condition. Our goal is to enjoy life as a family, to include her in all of the things we can, and make memories to last a life time. We will always hope for the best and do everything possible to make her life full of joy.
While it is my commitment to be open and honest in this blog, there will be medical issues that I choose not to discuss or might overly simplify for our privacy and to protect my daughter. Being parents of a child whose needs are so great, it is our job to make the medical decisions that we believe are best for her. We have walked into an area that is not one size fits all medical solutions, and we will simply take each situation with prayer and will make the decision that is in the best interest of our daughter. Because of the very personal nature of these decisions, they probably won’t be discussed in this format, however I am more than willing to talk one on one about our experiences with hydranencephaly and/or special needs adoption.
If you are interested in learning more about hydranencephaly, I recommend this resource
Our Growing Family 