Fedor and his mother, Elena, arrived at JFK International Airport this evening. Board member Nina Batalin and RGOL volunteer Witaly Jakowlew were on hand to meet the family as they arrived.
By this point, they had traveled from Voronezh to Moscow. And then nine hours to New York City. Tired, but very grateful to be in America for medical treatment, they have settled in comfortably at Ronald McDonald House of Long Island for two days rest before completing the last leg of their journey to the renowned Mayo Clinic in Rochester, Minnesota. Their first appointment there is on Tuesday, May 22, 2012.
Fedor suffers from Ebstein's anomaly, a birth defect. Ebstein’s anomaly is a rare disease involving the right side of the heart. This disorder occurs when the tricuspid valve, that divides the two chambers of the right side of the heart, does not form correctly. Normally, the tricuspid valve separates the right atria and right ventricle. In Ebstein anomaly, the valve forms too far down in the ventricle. This makes the right ventricle smaller and weaker than normal. Often there is also a connection between the left and right atria. The tricuspid valve usually has three parts that move freely. In Ebstein anomaly, one or two parts of the valve get stuck to the walls of the heart and don’t move correctly, so blood can leak back in the wrong direction.
The main problem in Ebstein anomaly is that the tricuspid valve is not located in the correct position. The valve is not only in the wrong position, but it also leaks because the parts don’t all move correctly. The leaky valve can cause blood to back up into the rest of the body, causing swelling of the legs and belly, an enlarged liver and difficulty breathing. If the blood backs up through the connection between the left and right atria, then there is mixing of oxygenated and unoxygenated blood that is carried to the body. This can cause a bluish discoloration of the fingers and lips called cyanosis. The hole between the atrial chambers can also allow blood clots to pass from the right side of the heart to the left and possibly cause strokes in the brain or tissue damage in the heart. Sometimes, children with Ebstein anomaly may also have an abnormal heart rhythm that can possibly cause fainting, a feeling of their heart racing or skipping beats, shortness of breath, or dizziness.
Doctors at the Mayo Clinic may be able to repair Fedor's heart using the cone procedure or they may have to replace Fedor's valve. Fedor and his mother are anxiously awaiting the day of surgery.