I’m not sure when the idea of having “awareness months” started, but for the most part, I think it’s helpful, especially for people with chronic illnesses and rare diseases. 

It gives people who often have to sit out on the sidelines of life because they need time to heal and recover, a chance to shed some light on their daily struggles. It also allows society to be more compassionate and understanding of one another.

Not all diseases and disabilities are visible and so any opportunity to raise awareness can be crucial for some people to live a better life. 

September is hydrocephalus awareness month and at our house, we are very aware of this incurable disease as it is one of two diseases that most affect my daughter, Johanna. 

Hydrocephalus used to be referred to as “water on the brain.” Jo was diagnosed with hydrocephalus as an infant. When the neurosurgeon showed us a sample of the shunt system — a valve and catheter to put inside our baby’s brain — he referred to it as “the plumbing.”  

It seemed pretty benign at the time, in comparison with the large mass that had been growing on Jo’s brainstem since in utero. But when that shunt failed six times in the first year of its placement, we soon realized that it was not simple plumbing, but rather a delicate system that could never totally mimic the natural flow of fluid in the brain. 

After Jo was born, I had a series of nightmares that I thought were caused by postpartum hormones and stress. I dreamed I was out in the middle of a dark ocean — no land in sight — while holding my baby in my arms trying to keep her head above the water. 

When I saw the first CT scan of Jo’s brain, her brain was drowning in it’s own fluid. 

I realized then that God had been preparing me for this journey and warning me that my baby needed help.

The most active patient advocacy and research group in the nation, the Hydrocephalus Association defines hydrocephalus:

Hydrocephalus comes from the Greek words: “Hydro” meaning water and “cephalus” meaning head.

Hydrocephalus is a chronic, neurological condition caused by an abnormal accumulation of cerebrospinal fluid (CSF) within cavities of the brain called ventricles, resulting in pressure on the brain.

It affects over 1 million Americans, ranging from infants and older children to young and middle-aged adults, as well as seniors.

There is currently no cure for hydrocephalus, but it can be treatable.

Cerebrospinal fluid (CSF) is produced in the ventricles and in the choroid plexus. It circulates through the ventricular system in the brain and is absorbed into the bloodstream. CSF is in constant circulation and has many functions. It surrounds the brain and spinal cord and acts as a protective cushion against injury. CSF contains nutrients and proteins that are needed for the nourishment and normal function of the brain. It carries waste products away from surrounding tissues.

Hydrocephalus occurs when there is an imbalance between the amount of CSF that is produced and the rate at which it is absorbed. As the CSF builds up, it causes the ventricles to enlarge and the pressure inside the head to increase.”

There are many different causes of hydrocephalus in children and adults. Some of these are congenital and some are acquired as a result of some type of obstruction in the brain. Some cases are diagnosed later in life as normal pressure hydrocephalus or NPH.

There are even cases in older adults where cognitive decline manifests and in trying to rule out dementia- hydrocephalus is discovered. Some people experience a reversal of that decline after a shunt is placed in the brain to control the fluid. 

In my daughter’s case hydrocephalus was both congenital — meaning she was born with it — and acquired because it was caused by the large mass which compressed her brainstem and destroyed the natural pathways for the flow of fluid in her brain.

The reason it took 12 weeks for the hydrocephalus to manifest clinically was that a baby’s skull is not fully fused and closed. Jo’s soft spot provided her brain room to accommodate the build-up of fluid and keep Jo safe. I’m grateful for that. 

Instinctively, I knew even in the delivery room that there was something wrong with Jo. But a jovial nurse tried to dissuade my concerns as she joked; “Honey, this is your fourth baby and you are just old!” I was almost 33 when Jo was born. The nurse’s comments made me laugh even as she annoyed me, and for the moment distracted me from my maternal instincts. 

Thankfully our pediatricians heard my concerns and monitored Jo closely until the day when these hidden diseases manifested signs of pressure in her brain. We got Jo to the hospital in time to be diagnosed and sent to the operating room for the first of many life saving brain surgeries.

Many people with hydrocephalus have frequent brain surgeries basically because shunts fail often. In my daughter’s case, she has frequent brain hemorrhages which also impact the flow of fluid through the shunt system, causing more scenarios that cause shunt failures.

I’ve met many families online in Facebook support groups who struggle as my daughter does with hydrocephalus and other brain diseases which impact their daily lives.

For the most part, these communities are non-judgmental and are truly trying to support one another on this unique and difficult journey.

There are days that I feel like leaving groups so I don’t have to face other peoples’ pain. It’s hard as a caregiver to see someone in pain and know that you can’t readily fix it. But I stay in the groups because I care and because I know a small word of encouragement, maybe even advice, can help another person find hope. 

This past summer, Jo’s had three brain surgeries, two in the last month. She now has three catheters in her brain, that come together through one connecter and flow into the shunt valve and down to her heart. 

Maintaining a sense of humor and a lot of prayer keeps us going. Last week when Jo was discharged from the hospital, she came home with the dressing stapled to her head to keep the wound protected and the skin intact.  

As we left the hospital, the doctor handed me a staple removal kit to remove the dressing after four days. It wasn’t big deal and there were only 5 staples holding the dressing to her head. 

But I couldn’t stop laughing as I thought — after 26 years and numerous surgeries, we didn’t get a gold watch to retire — they handed me the staple removal kit instead! 

Right now, the stitches in Jo’s head which form a little rainbow are telltale signs that she’s had brain surgery. For the most part, people are compassionate especially when they notice the bright-colored stitches in the back of her head. 

But I know for sure there are plenty of people walking around us who are battling hidden diseases and they may even have hydrocephalus like my daughter or another debilitating disease. 

If we follow the idea behind these awareness campaigns and remember that we don’t necessarily know another’s pain, so be patient and respectful, many lives could be helped by our kindness. 

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Eileen is a writer, speaker and wellness coach with a bachelor’s degree in theology from Franciscan University. She and her husband Steve live in Jamesport and have four young adult children. Email Eileen