Why I WALK to Raise Hydrocephalus Awareness

By Jeremie Alberts
Central Alabama Hydrocephalus Association WALK participant

My wife, Sarah, and I, first received the diagnosis at 16 weeks pregnant. At the time, we knew we were going to have a high-risk pregnancy, as she was having twins, but we had no idea of what was to come next. After receiving the diagnosis of hydrocephalus, the doctor informed us that it was prevalent in both of our little angels. One of our twins also had a secondary diagnosis of spina bifida. Sarah and I began to learn as much about the conditions as we possibly could, looking into expectations, both good and bad.

Fast forward a few months and we began to discuss options. From our understanding, the likelihood of fraternal twins being born with the same variation of hydrocephalus was extremely rare. Therefore, the medical team wanted us to test for Trisomy-13 and 18 to see if it was a genetic defect that would not allow them to live outside of the womb. After further discussion, we realized that the only reason we would want to test for it would be to determine whether or not we were going to push forward with the pregnancy as is. My wife and I determined that if God wanted them in this world, they were going to exist and we decided not to test. It turned out to be one of the best decisions that we could have ever made. A few months later, on July 14, 2015, Sarah gave birth to Lillian Paige Alberts (7 lbs 9 oz) and James Lee Alberts (7 lbs 6 oz).

James immediately went into surgery within 3 hours of birth to repair his spine from the opening created as a result of spina bifida. James was born with a head circumference of 38cm while Lily was born with a circumference of 44cm. We were told that both would be eligible for an attempted ETV/CPC operation, but a shunt would be placed if it didn’t work. Lily was all set to go into surgery as soon as possible, while James was set to wait because the severity of his was not as bad. The next day, however, James’ circumference had grown to 40.5cm due to CSF no longer escaping from his spinal opening. They opted to do the surgeries on July 17, 2015, which just so happened to by my birthday. They both survived so I guess you can say it was the best birthday present I’ve ever been given. After a 10 day stay in the NICU, we were released and sent home.

Since then, we have undergone numerous surgeries, including a hernia repair (James), 2 EVD’s with shunt revision and shunt replacement (Lily), and a shunt revision (James). Lily has had to receive a skull shaping helmet as a result of how her skull formed and we are still waiting to see what will be done for James. We love every day that we get with them and see them as the biggest blessing that we have ever gotten.

My wife first heard about the Hydrocephalus Association after looking around online and through various groups across Facebook. The information we received in the earlier stages from other families that have undergone the same things has been above reproach and for that we are forever grateful. Knowing that someone is out there trying their best to find answers that we as parents would desperately love to know is amazing.

We WALK for a variety of reasons, but most of all to help raise awareness for a condition that all but seems to pale in comparison to other more well-known conditions out there. I can’t count the number of times we’ve began to discuss our situation with other families and we typically get the same response: “Well, I’ve heard of spina bifida, but what is that other thing?” It may take years and years to get answers to the many questions that hydrocephalus has left us with, let alone to find a cure, but what we can do right now is WALK to raise awareness and band together as a community to stay hopeful.

Lastly, what we look forward to the most about the WALK is both designing awesome shirts every year and getting to interact with others who fight the same struggles every day. We are fortunate enough to be able to care for 2 children with hydrocephalus and let them brighten our day with every passing moment. As our shirts said last year: ‘shunts quit, we won’t’. We look forward to seeing everyone’s smiling faces on WALK day.