When Alex Simpson was born in 2005, everything seemed normal at first. Unfortunately, by the time she was two months old, she was crying far more than normal and having difficulty digesting milk, which prompted her parents to bring her into the doctor.

After a series of tests, they were given the diagnosis of hydranencephaly, which means the largest part of her brain, the cerebrum, never developed. The doctors said that they should not expect young Alex to live beyond six months old.

That was more than 20 years ago now, and while she requires constant care, Alex is still alive.

Understanding Hydranencephaly

A normal brain is broken up into three main parts. The vast majority of the brain is the cerebrum, which is the wrinkly bit that most people have at least seen pictures of. When people think of the brain, this is what they picture in their minds. The cerebrum performs many functions, including allowing for thoughts, consciousness, and more.

Behind the cerebrum is the cerebellum, which is far smaller and responsible for things like motor skills and certain types of fine-tuned movement. Under that is the brainstem, which is very small and primarily responsible for the most basic functions of the body.

Those with hydranencephaly do not have the cerebrum, or it is extremely underdeveloped.

This condition is quite rare, occurring in about 1 out of 50,000 live births, though researchers estimate that it may be as common as 1 in 10,000 of all pregnancies, with the majority of them resulting in a miscarriage.

In general, babies born with this condition do not live very long, but in cases where there is slightly more brain development, they can live longer. In one case, a woman lived to be 33 years old, though she was fully dependent on caregivers and was never able to walk. Another woman was 32 when she passed, and she was able to walk, but never learned to talk.

Alex’s father, Shawn Simpson, talked with Omaha’s KETV about his daughter’s condition, and life, saying:

“Technically, she has about half the size of my pinky finger of her cerebellum in the back part of her brain, but that’s all that’s there.”

He went on to say:

“She knows her mum and her dad, her little brother. She knows when good things are going on around us, she knows when bad things are going on around her.”

While sad and difficult, those with this condition can live a life that is happy in their own way. Unfortunately, there is currently no treatment for this condition that can help to trigger the growth of the missing part of the brain.

It is also not well-understood why this condition happens at all. There are likely a variety of causes including genetic, potential infections during pregnancy, stroke that cuts oxygen supply during development, and more.

Understanding this condition, and learning more about it, is important. For now, however, let’s all wish Alex the happiest of birthdays.

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