One Local Family Manages hydrocephalus

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UPDATE December 2019 / January 2020

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“Doctors were missing something, but we had no idea it would be something so serious.”

One local family manages

hydrocephalus with faith and resolve

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“Doctors were missing something, but we had no idea it would be something so serious.”

One local family manages

By Marcus Hoffman

hydrocephalus with faith and resolve

Becoming a parent is never easy. You know that your child will require a great deal of care and attention when they are young. And, as they grow older, you’ll be faced with a whole new set of obstacles and challenges. No matter how much as a parent you prepare, you’re bound to run into problems and hurdles along the way, large and small.

Perhaps one of the most difficult events a parent can deal with is a serious childhood illness. Not only will you likely be hit with unmanageable medical bills and forced to spend hundreds of hours in hospitals and waiting rooms, but the very existence and well being of your child is threatened. I had the opportunity to talk with the local McDade family, whose son Hunter was diagnosed with hydrocephalus when he was a baby. After spending months bouncing back and forth between doctors and receiving unsatisfactory answers, the family’s young son Hunter was eventually diagnosed with this serious, but relatively common medical condition.

Hydrocephalus comes from the Greek words hydro mean-

ing water and cephalus meaning head. Hydrocephalus is an abnormal accumulation of cerebrospinal fluid (CSF) within cavities in the brain called ventricles. Cerebrospinal fluid 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. This fluid is in constant circulation and has many functions, which includes surrounding the brain and spinal cord and acting as a protective cushion against injury. It contains nutrients and proteins necessary for the nourishment and normal function of the brain, and 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.

Read on to learn more about the McDade family’s story and the stories of others, to learn more about hydrocephalus, and, to learn how you can help those dealing with this under-acknowledged medical condition.

A special thank you to the Hydrocephalus Association (HA) for their knowledge and support of this article.

Soon after Hunter was born, the McDade family knew something wasn’t quite right.

He was crying far more often than a baby his age should. They took him to doctors in the area, and Hunter initially was diagnosed with different issues by different doctors including acid reflux, colic, and othes. Colic is a condition with unknown causes, which is primarily characterized by excessive crying in infants.

As the child grows out of infanthood, the child also grows out of the mysterious condition and experiences no health consequences as a result.

Now that the McDade family finally had a diagnosis for their son, it was time to act, and quickly. There is no cure for hydrocephalus, but in order to manage the condition, doctors use something called a shunt. If left untreated or if a shunt fails, hydrocephalus can cause a variety of brain problems. The skull of a young child with hydrocephalus can potentially expand to twice the normal size, causing brain damage and eventually even death, which is the most common outcome.

Time passed and Hunter’s crying failed to subside. On his 6-month well visit, the doctor noticed that Hunter’s head was getting larger. The McDade had not noticed anything unusual; his head looked like a normal-sized head for a baby his age.

Near the beginning of 2007, when Hunter was six months old, the family finally got the answers they were searching for, though these answers only spawned more questions and worries for the McDade family. Dr. Ben Carson told Theresa and her mother-inlaw Joyce that Hunter had hydrocephalus.

“I knew something wasn’t right, and that the doctors were missing something, but we had no idea it would be something so serious. I did find a little relief, but I was mostly in shock.”

Hydrocephalus is a relatively common, albeit serious medical condition. A combination of the Greek words “water” and “head,” the medical condition is marked by a buildup of cerebrospinal fluid (CSF) in the brain. CSF generally flows through the brain before being naturally drained. In individuals with hydrocephalus, the fluid fails to drain and builds up in excess in the brain. This build up of fluids in the brain is what caused Hunter’s head to swell to an unnatural size.

A shunt is a “simple”, plastic tube that drains CSF. There are two types of shunts, both inserted in the brain to start. One type runs from the brain down the neck and torso, finally draining into the stomach. The second type, which is the type of shunt Hunter uses, runs from the brain down the neck and ends in the chest. The purpose of a shunt is to properly drain the brain of fluid. It isn’t, however, a perfect fix for the medical condition. In February of 2007, Hunter, who was

not even one year old, underwent his first of many brain surgeries to have a shunt inserted.

According to the hydrocephalus Association (HA), over 50 percent of pediatric shunts fail within two years. For some, the simple plastic shunts succeed in draining brain fluid for years. In others, the shunt can fail after a few months or even less. In Hunter’s case, his shunt has failed or had difficulties about 20 times in his young life. To make matters worse, Theresa says that some doctors failed to notice issues with the shunts; sometimes until it was almost too late.

Theresa recalls one particularly scary event in 2009 when Hunter had to undergo major reconstructive skull surgery that took almost seven hours. Hunter’s brain was pushing against his skull, and his skull was not growing properly. Dr. Ben Carson, the world famous brain surgeon who was Director of Pediatric Neurosurgery at Johns Hopkins Hospital, performed the surgery. Unlike the other doctors, he could tell something was wrong with Hunter’s shunt and knew surgery was needed as soon as possible. To further complicate matters, Hurricane Irene was hitting the area at the same time. Dr. Carson had to use a police escort to get to the hospital during the storm.

“Looking back, I think that if Dr. Carson didn’t know something was wrong with my son, or if he hadn’t made it to the hospital

during the hurricane, I don’t think Hunter would have made it.” Dr. Carson performed a successful surgery repairing Hunter’s faulty shunt and saving his life.

The McDade family doesn’t believe it to be mere coincidence that Hunter’s doctor was Ben Carson, one of the world’s top brain surgeons. Instead, Theresa believes that God provided the McDade family with Dr. Carson to save her son’s life. “God heard our cry and Hunter’s too... He gave us the strength to see our child lying in bed screaming and crying his eyes out and not being able to do anything except pray and rely on Him and the doctors. He is the one who takes every single step with us along this journey. We seriously thank God for all he has done and will continue to do. Hunter wouldn’t be here without Him.” Having hydrocephalus sometimes causes other medical complications. In Hunter’s case, most of the shunt issues were caused by intermediate shunt malfunction, which means that the shunt works only intermittently. The symptoms can vary and can include excruciating headaches. Hunter’s symptoms are often different from others who have the same medical condition. If Hunter is screaming his head off or says his head is pounding, MRI’s or CT Scan’s don’t show any issues, but that doesn’t mean there isn’t something seriously wrong. For other parents whose children suffer with hydrocephalus, keep a watchful

Theresa and Hunter in the hospital for one of Hunter’s many surgeries.

eye on your child and also keep a list of their symptoms, information that is particularly useful if an emergency room visit is needed.

In 2018, Hunter was diagnosed with fourth nerve palsy, which was affecting his sight, making his vision blurry or he was seeing double. As a result of the palsy, Hunter developed a head tilt trying to clear his vision.

The fourth cranial nerve controls the actions of one of the external eye muscles, running from the back of the eye socket to the top of the eye. It turns the eye inward and downward and, if compromised, can cause double vision. In turn having the double vision causes the individual to tilt their heads, which can lead to muscles on one side of the face developing differently from the other side.

He required eye surgery to try to correct the vision problems, and the hope was that his vision and the head tilt would improve after the surgery. The surgery was done in August of this year by an eye surgeon, but he may need more surgery in order to completely correct the vision problems.

Also in 2018, Hunter was diagnosed with two different cerebral brain aneurysms. At this time, the aneurysms are still small, and the McDade’s and doctor are closely monitoring the condition with MRI/ MRA’s every couple of

months. An aneurysm is a bulge or ballooning in a blood vessel in the brain, which can leak or rupture causing bleeding into the brain. A ruptured aneurysm quickly becomes life-threatening and requires prompt medical treatment.

As I investigated this medical condition

and sought opportunity to learn how others were affected, Amanda Garzon, MA (pictured below), National Director of Program Services and Communications of the Hydrocephalus Association (HA), shed light on this condition and her own story with hydrocephalus.

Amanda was able to provide me with some information about why the condition gets so little coverage, and why that makes awareness so important. She raised a very interesting point: hydrocephalus is about as common as Down syndrome and more common than spina bifida and childhood brain tumors. So why does the potentially fatal and lifelong medical condition receive so little attention?

Amanda says that in the early 20th century, hydrocephalus was actually a bigger deal in the public eye. Prior to John Holter inventing the shunt, the death rate was much higher.

With Holter’s invention of the shunt, which provided a short term solution to the problem, people began to care less and less about the condition since there was a treatment protocol. But shunts often serve only as a short term solution. An estimated 50 percent of pediatric shunts fail within two years, and some people even experience dozens of shunt failures and issues that require surgery across their lifetimes, just like Hunter.

Amanda shared with me that she became involved with the HA because her daughter suffers from hydrocephalus. Her daughter

Gabrielle, now 17, has had nearly two dozen surgeries over the course of her relatively young life. She also suffers from a severe seizure disorder as a result of complications from hydrocephalus. Much of the research the HA is funding is focused more on prevention, which wouldn’t help Gabrielle, who already has the condition.

Amanda says that she finds solace in the fact that there might be a way to prevent the condition. “The idea that I could help contribute to finding a way to prevent hydrocephalus gives me the motivation to keep going, even when things are hard, and even if a lot of the research we do is focused more on prevention than curing the condition. If I could only prevent one child from developing hydrocephalus, it would all be worth it to me.”

Amanda wants any parents reading this to know that even if things are difficult now to stay strong. “You might feel alone; you might feel tired from all the late nights and surgeries and medical bills; and, you might be tired of explaining the condition, which is your reality, to someone who will probably forget about it before the day is over. But you have to stay strong and hang in there. You might feel alone, but you’re not.”

Currently, the HA is funding a variety of studies and programs aimed at preventing and managing hydrocephalus. In the last ten years they have spent nearly 10 million dollars on hydrocephalus research, and secured 32 million dollars in government grants.

While this may seem like a lot, there are diseases and medical conditions that receive

more in government funding, despite affecting roughly the same number of people; parkinsons is an example of this.

Due to the vast variety of potential causes for hydrocephalus, finding a cure is highly unlikely. The HA says, however, they’re optimistic about finding new ways of managing and preventing hydrocephalus. They’ve been funding research to create shunts that utilize modern technology and sensors. Not only do these newer shunts have less chance of failure, but some of the ones they have been working on have sensors to accurately detect when the shunts might fail.

Want to learn more about hydrocephalus?

HA has tons of valuable information on their website: https://www.hydroassoc.org/. You also can donate to the HA through their web site. The majority of funds they receive go directly to medical research with the goal of finding ways to prevent, manage, and potentially even cure hydrocephalus. Donate to help find a cure!

The McDade family is helping others dealing

with hydrocephalus through fundraising, raising awareness about the condition, and making donations. They have started a hydro warrior group that is fundraising and putting smiles on faces that have experienced the condition. Last year at Christmas, the family visited with a young girl at Johns Hopkins Hospital who was hospitalized with hydrocephalus. They brought gifts to brighten her hospital stay. Hunter wants other kids to feel as if they are warriors… and they definitely are fighters!

The McDate family has some advice for parents with children with this medical condition: •Listen to your gut, you know your child and their condition better than anyone.

•Become an advocate for your child, learn everything you can about the condition and don’t be afraid to speak up.

•Join in fundraising for research and raising awareness about hydrocephalus.

•Join a support group; the condition not only affects your child, but the entire family.

•Stay strong and lean on each other, but take your rest time as well. You need your strength.

•Treat your “hydro” kid like other kids •Remember… you are not alone in this struggle.

Hunter, now thirteen years old, is doing as well as he can in light of his condition. An avid sports fan, he enjoys playing basketball with family and friends and gets excited about the Ravens during football season. He also enjoys reading and writing.

The future for Hunter is uncertain, but the McDade family remains optimistic. “Hunter is around today because of God’s protection,” Theresa says, “and I think He’ll continue to protect him... maybe one day we’ll find a cure, you never know.” Theresa also shared with me that she hopes that Hunter will grow up one day to have a family of his own. No matter what happens, one thing is certain, the McDade family is tough, and with faith and love they’re sure to make it through.

If you would like to donate to help the McDade family, you can contact Theresa at theresamcdade@ymail.com.

Hunter’s dad

Ben Carson A Legendary Surgeon

There aren’t many world-famous surgeons, but Ben Carson is one of them.

He is responsible for reviving a type of surgery called hemispherectomy, in which part of the brain is removed, similar to a lobotomy. The surgery, due to its high risk, had not been practiced for decades. Ben Carson famously brought this risky surgery back for patients with severe seizures and was able to perform it many times successfully. Some of his patients were completely cured of their seizures and had little to no cognitive defects, helping to bring the surgery back into the modern medical world.

In the 80’s, Ben Carson performed the first and only successful separation of craniopagus twins, twins who are connected at the head. It was this surgery that propelled Dr. Carson into the national spotlight where he has remained. Is it just by coincidence that the McDade family was able to get one of the best surgeons in the world? Theresa believes that having Dr. Carson as a surgeon for Hunter was no accident and that God brought the McDade family and Dr. Carson together to save her son’s life.

The world knows Dr. Carson as a revolutionary brain surgeon who also is active in politics, but he comes from troubled beginnings. Dr. Carson grew up in a rough area of Detroit, raised by a single mother who juggled several jobs to make ends meet. Dr. Carson had no interest in studies and was becoming violent. In a final incident, Dr. Carson almost stabbed a friend after arguing about radio stations. He says that soon after the almost-stabbing incident, he began to regularly read the bible and applied verses from Proverbs to the anger in his own life. Under the guidance of his mother, Dr. Carson began to take his studies seriously. Just as the McDade family attributes their son’s continued survival to God, Ben Carson attributes his revolutionary surgery career to his faith. Today, Ben Carson is actually noted for his calm demeanor and for being very soft spoken. He credits his personal evolution to the bible.

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