Ryan's Story: Parent's Letter Project Dandy-Walker syndrome and hydrocephalus - Ryan's parents

The day we found out we were having a precious little boy we also were told by a private radiologist that it looked like he had something called Dandy-Walker syndrome and a condition called hydrocephalus. Having never heard of either, we were informed that it looked like part of the back of our son's brain was underdeveloped and that fluid naturally produced by his brain was gathering at an unnaturally alarming rate. The last thing we were told was that we would need to be seen by the experts at Children's National the next day and to expect a phone call that evening telling us when and where to arrive. We were only 19 weeks into the pregnancy of our first child and were completely devastated.

Hope - gone. Dreams - stolen. The future - uncertain. Our world was crashing around us.

The next day, when we arrived at Children's the diagnosis was confirmed; it was Dandy-Walker syndrome and hydrocephalus. We were told that Children's would support us in whatever we decided. Those were just words until we met John Myseros, MD in Neurosurgery later that afternoon. He spoke to us as parents instead of patients and gave us the most reassuring advice. He said, "No matter what happens, one day you are going to look down at your son and you won't see Dandy-Walker, you won't see hydrocephalus, you are just going to look down and see your son." He was right.

You probably are going to be seeing a lot of specialists as they care for you and your baby. Please know that all the doctors and nurses at Children's will help you and will explain everything to you. Take the time to ask for second opinions on big decisions and don't discount what you as parents feel may be the best course of action. Your baby still needs you very much and no one is going to advocate for your baby better than you. We know that the unknown is so very hard because being here and getting the new labels is different than you expected. Just know that you are in the best hands possible and that they will support you just as they supported our family.

Today Ryan is a 4-year-old who walks, talks, runs, screams, kicks, throws, and terrorizes the family cat. Everything may look pretty overwhelming now, but remember that you are not alone. You are part of a much larger family now - the Children's National family. When your baby is ready to go home they will make sure that everyone (baby included) will know what to do.

Sincerely,

Ryan’s parents, Andrea and Eric

Treatment Team

Invest in future cures for some of life's most devastating diseases

See other ways to give

Keep in touch with Children's National by signing up for our newsletters.

Sign up now