Dear parent of a child with a chiari malformation,
We know how frightening it is to be told your child has a chiari malformation. We remember asking the doctor to please repeat those words. We had never heard them before. Thus, we began spending countless hours learning everything we could about chiari malformation. It is very overwhelming and can be all consuming. There is hope and we found it in our neurosurgeon, Robert Keating, MD, and Children's National Medical Center.
There are many people walking around with a chiari malformation. Some have no idea they have one at all, they are completely symptom-free. They may never develop symptoms and live happy, pain free lives. Yet, there are others who have a variety of symptoms that cause them to have an MRI and they are diagnosed with a chiari malformation. Our 7-year-old daughter fell into the last category.
It was very frustrating trying to figure out what was wrong. Many doctors told us that chiari malformation was not her problem. We saw one doctor who told us "chiari malformation is a variation of normal." This is not true in our daughter's case. Every person with this malformation can have their own unique set of symptoms and a good doctor will recognize this.
After months of unanswered questions and no treatment plan from local doctors, we knew we had to find a specialist. We wanted to see a leader in the field, one who taught other doctors about this disease. Searching the internet, we found Dr. Keating, chief of the Division of Neurosurgery at Children's National. The only problem was he was in Washington, DC, and we live in northeast Florida. We contacted him by e-mail and described our situation; he responded promptly. He recognized that each person is different and it was possible that our daughter was suffering from chiari malformation. We worked together and arranged for MaryEmma's records to be forwarded to him. After the initial review, we made plans to travel to Washington for additional testing. Not only did our daughter have chiari malformation, she also had syringomyelia.
Dr. Keating offered us hope by presenting different options available to us. He spent a tremendous amount of time with us when we were in Washington. When we returned home, additional questions and concerns were personally answered promptly by Dr. Keating through e-mail. This all worked out very well for us. Really, Dr. Keating has adopted our entire family.
If one can have a sense of calm while being in a hospital, we consider that a really good hospital. We found that to be true at Children's National. Everyone we came in contact with helped us with a comforting smile and great attitude. One afternoon, we were lost in the hospital and a doctor saw us in the hall. He stopped what he was doing and personally walked with us to show us the way. Compassion for people circulates throughout the entire hospital and it eases everyone's pain and anxiety.
The staff at Children's National understands chiari malformations and syringomyelia. Living with a chiari malformation and syringomyelia can be physically and emotionally draining for patients and their families. The team at Children's National will go a long way helping you sort through all of this. Our wish is that you and your family finds hope, faith, and an optimistic outlook for the future at Children's National. We did.