11-Year-Old Tyler Side From Washington State Selected as 2016
National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

Up until the night Tyler was born, my pregnancy had gone perfectly and we didn’t have any reason to suspect that the remaining 11.5 weeks would be any different that the first 28.5 weeks had been. At the time, my husband and I were stationed at Ramstein Air Force Base in Germany, away from family and friends, but embracing the culture and travel that being stationed overseas offered. After a day at work and suddenly becoming ill, I agreed to go to the hospital thinking that I would just need fluids to combat what I thought might be the flu. Little did I know that night would change our family’s lives and prove to be one of the most emotional rides we’ve ever been on.

Tyler was born at 28.5 weeks gestation on January 28, 2005 in Landstuhl, Germany due to placental abruption resulting in an unplanned emergency C-section. At 2 pounds 12 ounces, he was rushed to the NICU to be ventilated and for many days his survival was not certain. Early ultrasounds showed that Tyler had a Grade 2 and Grade 4 intraventricular hemorrhage and we were devastated when the doctor told us that any further evidence of bleeding in his brain would mean that there was nothing else they could do for him. In the days that followed, we were hopeful that Tyler would pull through but uncertain what that would eventually mean.

When there were no additional signs of increased bleeding in his brain, we celebrated but were told that due to the damage, Tyler may never walk or talk, and though the bleeding had stopped, he was not nearly out of the woods. A few days later, at twenty days old, we received news that Tyler had post-hemorrhagic hydrocephalus and at the time had no idea what this meant or how it would affect our precious baby. Since we were still at the military hospital in Germany, we didn’t have access to a pediatric neurosurgeon and were faced with a choice to be transferred to an off-base German hospital or sent back to Bethesda Maryland where he could be treated. We chose the latter and with short notice were moving across the world on a military medical evacuation flight to the National Naval Medical Center. To say that Tyler’s first month of his life was a whirlwind would be an understatement, but we would soon find that the ups and downs had only just begun.

Arriving in Maryland, we were thankful to be stateside, but were still far from our family in Washington State (though we did have quite a few visitors to see our miracle baby!) Tyler’s first shunt was placed externally and it pained us to continue to see him connected to so many tubes, though it did help relieve the pressure which had caused him so much discomfort. Unfortunately, that surgery would be the first of many as Tyler ended up needing a second, third, fourth and fifth external shunt all within 10 weeks. We struggled knowing that the surgeries were necessary but knew that every time the doctors would have to operate, the risk of the shunt failing continued to increase as the white blood cells rushed to heal the site where it could easily clog the catheters meant to help him.

Our next obstacle came when Tyler was diagnosed with necrotizing enterocolitis, and he had to have a large section of his bowel removed. This was another setback in his healing, and we were again filled with questions, worry, and doubt. We often felt so unprepared and spent countless hours and days in the NICU sitting beside Tyler’s bed just hoping and praying that the progress he made each day would not continue to be set back by surgery, infection, and uncertainty.

At just over 3 months in the Bethesda, we were again transferred to another hospital, this time moving to the Children’s Hospital of Philadelphia where Tyler’s shunt would be internalized. While this seemed to be a promising next step, it took a couple tries as the first shunt, a ventricular peritoneal shunt failed due to the scar tissue from the bowel resection. Much to our dismay, the next location that was chosen for Tyler’s shunt placement was through his jugular vein and into his heart, a ventricular atrial shunt.

Nothing seemed scarier, at the time, then knowing that the surgeons were going to feed the catheter through Tyler’s jugular vein toward his heart and have his body absorb the fluid in his bloodstream! Especially in such a tiny body, it seemed impossible that this option would work. However, on May 24, 2005, after nearly 4 months in the NICU, Tyler was finally able to come home!! He had undergone seven shunt surgeries and one bowel resection, but we were elated to finally be leaving the hospital. Being first time parents, we were paranoid about who he was around, if people had washed their hands before holding him, and where he may be exposed to germs, and having him just come home from the hospital after a roller coaster ride his first four months, we were even more paranoid! While the shunt did work for a short time, we did end up in the hospital four more times for shunt revisions in 2005.

Thankfully, however, in 2006, 2007, and 2008, Tyler only needed one revision each year, the last of which was to change the location of his shunt to be a ventricular pleural shunt. During his 2008 surgery, I can clearly remember the pediatric neurosurgeon coming to speak with us after the surgery with a concerned look. The surgery had taken much longer than normal, and the neurosurgeon had described the new location as having to ‘get creative’ in deciding where to go since the many revisions he already had used the most common shunt locations. Thankfully, the new placement was a success and since September 2008, Tyler has only had to have two more revisions, the most recent of which was in July 2014. To date, Tyler’s hydrocephalus has resulted in 16 surgeries so far, and like most parents of a child with hydrocephalus, the next possible shunt failure and surgery is always in the back of your mind.

Anyone that has met Tyler will say he is the sweetest and most charming boy. And any early doubts about his ability to walk or talk were proved wrong as Tyler worked through speech, occupational, and physical therapy to meet major milestones. The resilience and strength Tyler has shown in light of all that he has been through has taught us so much about life and perseverance. At ten (nearly eleven he reminds me), Tyler says he wants to be a doctor when he grows up and he loves riding his bike and scooter, skateboarding, playing video games with his friends, and listening to music.

When I asked him how he feels about having hydrocephalus, he said that sometimes he’s scared and sometimes he is just sad. He’s scared because he doesn’t know when his shunt is going to stop working and it makes him sad that he can’t play soccer like some of the other kids since he can’t get hit in the head. He said, “Being a kid with hydrocephalus is scary because the doctors have to cut into your head to find out what is wrong with your shunt.” But he followed this by saying, “but once, they’re done, then you feel much better.”