Sunday, September 8, 2019

Hydrocephalus Awareness Month, Comin' Atcha


It's fitting that our baby girl, with an October due date, was necessarily born in September (literally the day we reached full-term) so we could get her the life-saving brain surgery she needed just a little bit sooner...because September is "Hydrocephalus Awareness Month!"

I have chronicled some of our journey with Hydrocephalus, but I often hear questions and comments (seriously, feel free to ask me questions!) that suggest few people understand what Hydrocephalus is or how it impacts our family life.

Cue Hydrocephalus Awareness Month.

1. Source  2. Source  3. Source

Unless you study the brain or measure the head circumference of infants for a living, our daughter's measurements and all the medical terminology will mean very little - so instead I'll ask you to picture this scenario:

Imagine your baby is born with an off-the-charts, toddler-sized head. This fact alone means an automatic delay of gross motor skills (and therefore physical therapy) in early months/years because of how strong baby must become to achieve "simple" tasks like holding her head up independently. But more than that, the increased head size has been caused by fluid building up inside the brain, which will continue to happen without surgical intervention - to the point where it is almost always fatal. Surgery is needed to save your baby's life - and because the device she will depend on for survival (a shunt) has the HIGHEST FAILURE RATE of ANY MEDICAL IMPLANT DEVICEšŸ˜² she might need additional brain surgeries any day of her life. With a wide range of causes (many which are idiopathic) and potential outcomes, there is no way to predict what kinds of physical and/or cognitive disabilities she may (or may not!) have from months of pressure being placed on her developing brain - not until she is born and the story of her early years begins to unfold.

Rosalie has had 4 brain surgeries. And while her Hydrocephalus does NOT define her, it does mean her ability to grow and thrive is directly impacted by whether or not her brain condition is stable/being effectively managed. In our case, Hydrocephalus has caused additional neurological diagnoses that require medication and multiple therapies so she can best access and interact with the world around her. Each case is different, but there is one glaringly obvious common thread that is true of every single person living with Hydrocephalus: the only treatment involves brain surgery.

Before: Rosalie at birth. After: Rosalie, a week after shunt surgery.
Her head is the same size today (at almost 2 years old) as it is in the "after" photo.

I am SO grateful to live in a time when Hydrocephalus is not an automatic death sentence and has an effective treatment! But when the ONLY treatment carries a life-long risk of needing multiple, unpredictable brain surgeries (and any number of possible complications) I think we can do better. And considering someone in the U.S. has brain surgery related to Hydrocephalus every 15 minutes, we need to do better. (#NoMoreBrainSurgeries #FindACure)

When we experienced the ultrasound we never expected, we were given medical literature that tossed around a lot of sobering statistics. At the time, the doctors knew our daughter had a severe case of ventriculomegaly (when the brain's ventricles are enlarged), but they could not "officially" tell us it was Hydrocephalus until we went back for further ultrasounds and saw how much her measurements continued increasing throughout the pregnancy. There can be other causes of ventriculomegaly that are not Hydrocephalus, which is partly why the statistics and literature were so grim. I do not mean to suggest that Hydrocephalus is anything other than a serious, life-threatening brain condition, but the fact is that it's far more common than most people realize!

In reality, 1 or 2 babies out of 1000 will be born with Hydrocephalus, making it almost as common as Down syndrome. It is the most common reason for brain surgery in children (it's basically a pediatric neurosurgeon's bread and butter), but while some babies are born with it, anyone can develop Hydrocephalus through brain injury, infection, or as part of the aging process (something that commonly gets misdiagnosed as dementia). There are over 1 million Americans living with Hydrocephalus, so why don't we hear more about it?!

This September, I hope to raise more awareness of our daughter's brain condition. Thank you to all that have taken the time to read my little PSA! After all, raising awareness plays an essential role in developing better treatment options or (we hope!) a cure.

If you would like to make a donation to an organization funding leading Hydrocephalus research, I recommend both the Hydrocephalus Association and the Pediatric Hydrocephalus Foundation.

"I wouldn't change you for the world, but I would change the world for you."

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