This video is of Winston (Tug) just after his first brain surgery – one year ago. He was about 3 months old.
Whenever you have a child with a difficult start in life, it seems that there are more chances for that child to need more medical care. To ensure Tug stayed healthy and was growing well, a nurse and a physical therapist measured, supported, and loved my Tug. A Registered Nurse visited our home to check on this fragile little guy weekly. After almost two months at home, Tug’s therapist observed that his soft spot was getting larger. He also seemed to have developed soft spots on the sides of his head. My little squishy baby had been home from the NICU for a little over two months, but all was not well. Winston (Tug) was diagnosed with Hydrocephalus on June 5th, 2016.
Hydrocephalus is pressure on the brain caused by a build up of Cerebral Spinal Fluid (CSF). There is no cure. Very rarely, Hydrocephalus can resolve on its own. This brain disorder has so many possible causes that trying to treat the causes isn’t the focus yet. The neurologists and neurosurgeons focus on eliminating the most life threatening and damaging aspect of the disease – CSF pressure.
Pressure in and around the brain can be catastrophic. The least dangerous problems are daily horrific headaches, dizziness, and lethargy. These can occur without treatment or if the treatment is not working properly. If pressure continues to build, it causes the ventricles in the brain to expand. Water doesn’t compress, but brain matter will. High CSF pressure will often limit circulation to the optic nerves – causing permanent vision damage or blindness. Long-term and/or extreme pressure causes head enlargement in infants and developmental disabilities. Those with no access to treatment usually die.
When properly managed, those with Hydrocephalus are able to lead productive and happy lives. The best ways to manage Hydrocephalus, currently, are either ETV (Endoscopic Third Ventriculostomy) or the insertion of a CSF shunt into the person’s brain. Yes, the safest and best treatments are both brain surgeries.
We met Tug’s neurologist for the first time on June 4th, 2016. He was concerned with Tug’s significant vision delay and agreed that his head growth was measuring abnormally fast. He urged me to see the pediatric neurosurgeon, Dr. Cherney. The next day, we met The Amazing Dr. Cherney and the nurse practitioner, Mitzy. They both took great amounts of time checking on my boy. Within an hour of our appointment, Tug went in for a head ultrasound. We returned to Dr. Cherny’s office once the procedure was complete. Our Pediatric Specialty Center is across the sidewalk from the hospital, so it is relatively easy to walk back and forth.
Mitzy immediately read Tug’s results and explained that Tug had something called Hydrocephalus, or water on the brain. She strongly recommended that he have surgery in the next few days to address it. I felt overwhelmed and a little confused. She had explained all of the complications and permanent damage that Hydrocephalus can cause. Why was she giving me the option to wait and think about it? Later, I realized it was her way to help me feel like I had some control over what was happening to my baby. At the time, I told her that sooner seemed best and asked if there was an opening that afternoon or the next morning. She assured me that the next morning would be safe and good for Winston. (She didn’t know I called him Tug)
Tug and I arrived at the hospital the next morning around 6 am. My husband, Paul, needed to take care of our older boy at home. Our cousin, Heather, was there to meet me to make sure I wasn’t alone. Countless doctors, nurses, information, and questions flew through the pre-op room and my brain. I remember very little of that day, that week actually. What I do remember, is that Heather took care of me. She asked questions and made sure we knew what was going on. I was blessed to have her level-head and love with me that day.
At around 8 am, the team began to wheel my baby away from me and down a hall – to a room I could not enter. I realized I hadn’t hugged or kissed him goodbye. What if…? Bad things happen, right? My baby was about to have brain surgery. I chased them down the hall for about ten feet. The nurses sympathetically stepped aside to allow me room for one last kiss, one last caress, one last “I love you.” I watched them go until the blur of my baby’s hospital bed turned the corner and was gone.
The following hours felt like days of misty worry and watery hope. After what felt like a century later, a nurse found us to let us know that all had gone well and Dr. Cherny was closing up. She assured us not to worry if it took a while because Dr. Cherny was a perfectionist and always took longer than any other doctor. It was wonderful to hear that the man in charge of drilling a hole into my child was so particular. I could breathe again. Eventually, they called me into the post-op room so I could snuggle and feed my patched up little guy.
After a few measurements were taken, the nurses helped place Winston (Tug) Augustus Smith into my waiting arms and everything was OK again. My heart was home.