Written by Alex Rhodes
Miles was born on October 14, 2011 at 37 weeks gestation after what was a healthy pregnancy and normal birth; we were beyond blessed to have this beautiful baby boy enter into our lives. The first three months of Miles’ life presented the normal newborn/infant challenges – feeding regimens, late nights, early mornings, lots of crying, the usual. Except around that three-month mark, we noticed Miles’ cry became a little bit higher pitched and his head began to grow in size at what seemed to be a faster rate than normal. We did some researching and Googling and of course were scared to death at what it could possibly be. The word “Hydrocephalus” kept popping up in all of our research; a condition my husband and I had never heard of. Certainly, this couldn’t be what our perfect, beautiful, brand new baby boy had. How could that be possible?
Sadly, after visiting our pediatrician on January 25, 2011 (we’ll never forget that day), our suspicions of Hydrocephalus were one step closer to being confirmed. We were instantly referred to Penn State Hershey to visit one of the best Neurosurgeons in the country, Dr. Mark Iantosca to confirm what in fact was going on. We all know that not much seems to happen quickly in the medical world but what occurred over the next several months happened so quickly; looking back, it seems like a blur. Upon meeting with Dr. Iantosca for the first time (not even 24 hours after our initial visit with our pediatrician), a series of CT scans, an MRI, physical exam and an x-ray, Miles’ Hydrocephalus condition was confirmed. It was at this very instant that our lives would change. Forever. In that moment, it seemed like there could be nothing worse. In retrospect, we feel blessed and fortunate to be where we are as a family, where Miles is as a little boy. What I’ll describe later might help to make that more clear.
As mentioned previously, after our initial visit with Dr. Iantosca, everything moved very quickly. Dr. Iantosca informed us that Miles’ condition of Hydrocephalus was not only severe but also very complex. Perhaps I should back-up and explain, “What is Hydrocephalus”? After all, before this we had never heard of it either. Hydrocephalus is a condition where fluid (cerebral spinal fluid or CSF) builds on the brain. This can be due to multiple things – a traumatic event or injury, a congenital defect in the womb or at birth, an infection, etc. Since the body is unable to drain its own CSF in people with Hydrocephalus, the fluid then builds on the brain, causing pressure to build, resulting in adverse side effects on the brain and body (which as you can imagine impacts many things – mobility, vision, earing, etc.).
In Miles’ case and what made his condition so severe and complex, were multiple ‘elocutions’ or ‘cysts’ that were in the brain, filled with CSF, and blocking the rest of the CSF from draining on its own (a normal bodily function, our bodies/brains drain our CSF constantly without us ever even knowing). As a result of his body’s inability to drain his CSF, steps needed to be taken to address the multiple cysts in his brain. In the early days and weeks after first learning of Miles’ condition, he had 5+ surgeries to puncture and drain the cysts in an attempt to allow the body to drain his CSF naturally. External drains were placed in Miles’ brain to allow the CSF to drain outside of his body (these drains are called EVDs, external ventricular drains) and allow CSF to be tested for possible infections or issues (amongst other things). While one of these EVDs was in place and the CSF was being tested regularly, we were informed that Miles tested positive for a highly contagious and antibiotic resistant infection. The infection needed to be treated urgently and swiftly. As part of the infection Miles had a PICC line placed where my husband and I had to administer high doses of antibiotics for several weeks. During this time, Miles’ Hydrocephalus was unable to be treated until the infection was cleared of his system. This weighed on us heavily – it extended our hospital stays, made Miles increasingly more uncomfortable and left us anxious to continue making progress to fight this condition that was inhabitating our sweet little boy.
The sun finally appeared between a thick patch of clouds and we received the good news that the infection was rid of Miles’ body. Now, back to work!
Dr. Iantosca and his incredible team operated several more times in an attempt to stabilize his condition in order to avoid placing a shunt. Shunts are very often used to treat Hydrocephalus, they’re an amazing piece of modern technology that are able to do what the body is unable to do, drain CSF via a valve/pump system which connects to a tube that most often extends from the brain behind the patient’s ear and into their abdomen, all the while draining the CSF. The CSF then reabsorbs and recirculates into the body. A shunt sounds like the golden ticket right? Well, not quite. As with any foreign piece of equipment or mechanical system placed in the body, they do not come without complications and in the case of shunts, infections and malfunctions (clogs, breaks in the tubing, etc.). Dr. Iantosca and his team worked tirelessly to solve Miles’ case without placing a shunt but unfortunately, a shunt for Miles was inevitable. Today, 2O+ surgeries and four shunts later, we’re approaching our 1-year “shuntiversary”. A holiday often celebrated by Hydrocephalus warriors when they’ve been shunt revision free for a year or any significant period of time that’s successful and worthy of celebrating!
In addition to the shunt side effects I mentioned, Hydrocephalus has caused other difficulties in Miles’ development. About a year after he was diagnosed with Hydrocephalus, he was also diagnosed with a seizure condition known as infantile spasms. This condition was treated by a controversial and extremely expensive medication known as ACTH. The medication needed to be administered once again by my husband and I through an injection in Miles’ leg for 6-weeks. It was terrible, for all involved but yet again, a rainbow appeared from behind the clouds and Miles remains seizure free for close to a year. In addition to the seizure disorder, Miles also continues to experience physical and mental delays from his conditions and multiple long-term hospital stays and frequent bouts of immobility. He his privileged to receive Early Intervention Services through the State of Pennsylvania, specifically Physical, Occupational and Speech therapies.
So, you’ll remember a few paragraphs ago when I mentioned the day Miles was diagnosed felt like the worst day of our lives, but I ended my sentence with how blessed we feel as a family today. Through it all – the surgeries, the diagnosis, and hospital stays, infections, you name it we’ve seen it – we’re here today, standing strong as a family with that same beautiful little boy. He starts and ends each day with a smile and laughs all of the way through, despite his delays he is the toughest kid we know and fights like no other to do exactly what he knows he’s capable of. His beautiful qualities wrap themselves around each and every person he meets. We constantly worry about the obstacles and adversities he may face but we were told once and it stays with us, “Miles will always attract amazing people, because that’s whom he is”. This could not be more true.
I’ll end all of this by saying, I found out I was pregnant with Miles on March 1, 2011. If someone told me on that day that this is what our child would endure I would never have believed you, that’s not possible. We still have questions and thoughts of anger and frustration but mostly we’re filled with joy and thankfulness for all of the blessings we’ve been given. Our son, our family and an amazing extended family that consists of a phenomenal hospital that’s right in our back yard, Penn State Hershey Medical Center. An equally phenomenal neurosurgeon, Dr. Mark Iantosca that could choose to lend his skills and expertise anywhere in the world but he’s at Hershey, for which we are so thankful. A best-in-class facility, nurses and care staff that keep us comfortable and safe, and lend a warm and loving ear when the day just seems to get you down. But most of all, we’re thankful that in all of these people, with all of the different experiences and skill sets they possess, they love and care for our son as if he’s their own and they choose to work and care for patients and warriors like Miles at Penn State Hershey. For that we and as a community, we are truly blessed.
WORDS OF ADVICE
If you have absolutely any concerns or suspicions at all, it’s absolutely ok to be paranoid and neurotic. You are your child’s advocate and voice, they need you to be this way! Your pediatrician should be your first stop if you notice any of the initial signs and symptoms. If there is cause for concern, you will likely receive a referral to a local Neurosurgeon or Neurologist. They will guide you on the best course of action from there as every child’s case and treatment plan is vastly different.
Research, Detailed Information and Further Resources: http://www.hydroassoc.org/hydrocephalus-resource-library/
Support Groups and Hydro Community Network:
Glossary of Medical Terms often Used in a Hydrocephalus Diagnosis:
Facebook Hydrocephalus Family Support Group (families across the world are in this group):
Pennsylvania Early Intervention Services – developmental support (birth to 3 years): http://www.portal.state.pa.us/portal/server.pt/community/early_intervention/8710
Follow Miles’ Warriors on Twitter – @Miles_Warriors
My personal contact information that can be shared with anyone looking for more information or just needs a support unit: firstname.lastname@example.org