What is Hydranencephaly?

In simple terms, it’s a rare neurological condition and the catalyst for this blog and my writing. God has used my daughter to teach me the most important lessons of my life, and given me a passion to share those lessons with others. I had never heard the term before adopting our daughter. When doctors spoke to us and explained what hydranencephaly is, my mind reeled and my heart broke. According to the Global Hydranencephaly Foundation, hydranencephaly is “a neurological condition that presents as the absence of the brain’s cerebral hemispheres to a great degree— think grey matter.” In crude and misleading terms, some say that hydranencephaly means the absence of a brain. When we adopted our daughter, that’s the gist of how it was explained to us by the medical community. Along with the terrifying explanation that because you can’t live without a brain, our daughter would die before she reached her first birthday.

We’ve since had our hearts mended by a gracious God. We grieved the loss of our expectations and desires for our daughter and we pressed forward. Inspite of the doom and gloom presented at the beginning of our journey, our daughter has thrived, and we have now been on this journey for 3 “impossible” years.

During that time, we’ve learned that while our daughter is missing the majority of her cerebral cortex, her brain stem is far more capable than doctors believed. She loves and interacts with her family in a way that her NICU doctors declared impossible. She is legally blind, but she can see light and shadows and has a great awareness of the people around her. She cannot walk or independently grab toys but explores her world in her own way, and with therapy continues to make progress and defy the odds. She is tube-fed, but instead of seeing that as a negative, it’s been a blessing to helping her stay healthy with the right balance of medication and nutrition.

Because of our little Wonder Woman, we’ve learned not to let fear define our lives. We’ve learned what it looks like to love unconditionally, and we’ve had the immense privilege of being loved unconditinally by our daughter. Hydranencephaly is still considered life-limiting, but it’s only limited by time. We now know life is defined by love, and the love that our daughter has is limitless. 

If you are interested in learning more about hydranencephaly, I recommend this resource: Global Hydranencephaly Foundation You can also donate to this nonprofit and the work it’s doing giving hope and support to families like ours around the globe.