Hello we are parents of Anamaria who was born on February 23, 1999. She was found to have a heart murmur by the pediatrician 24 hours after  her birth and was referred to a cardiologist. We were told it was a good chance it was not serious since many children are born with heart murmurs. She also had a very faint pulse in her lower extremities. Anamaria was sent for tests and the cardiologist came to my room to confirm that our daughter was diagnosed with aortic stenosis. We were told she needed to be sent to a good children's hospital for either open heart surgery or balloon valvuplasty. We were in such shock with this unbelievable nightmare since we had two healthy boys prior to her birth.

We had such great support from family and friends and even strangers around the world. Many people were praying for our daughter so it really brought much peace and comfort during this time. My brother had two boys and their third child was a girl who also had aortic stenosis and was born 2 years prior to Anamaria's birth. The doctors were amazed to see this in our family since chances are higher in boys and much lower to reoccur like that in families.

Anamaria received balloon valvuplasty at the age of 2 days old and was monitored on a monthly basis for 13 months until she received the Ross procedure on April 24, 2000. The Ross procedure is when they take the aortic valve out and replace it with the pulmonary valve. They then replace the pulmonary valve with a homograft from another person that was donated to the hospital. We are so grateful to the family that out of their charity and love donated the pulmonary valve tissue from their lost loved one to help our daughter live comfortably. Thank you!

We are glad for the family, friends, and strangers who supported us in many ways. We are sorry we did not know about this support system but will now make it an effort to use this to help others in any way. Our daughter is a strong, independent, and feisty girl. She is currently only on blood pressure medicine which may be discontinued soon. She is seen twice a year but may decrease to yearly visits. The surgeon was pleased to see how well the heart is functioning and the murmur is very faint. She now has very little leakage and we are very relieved to know it may be a long time before she may need a replacement of her pulmonary valve. The aortic valve usually grows with the child. We were told by one surgeon to have the valve reconstructed but the prognosis was higher for reoperation within a year. We advise others out there to be sure to get other opinions before making a choice for treatment. We felt that the surgeon wanted to use Anamaria to practice his skills and not do the right thing for her. So that is why we got another opinion from another well known source. We also prayed and asked for guidance. We need to know the facts, reasons, prognosis, and treatments following before making a decision that will make a big difference in the end.

Thank you for hearing my story and we hope to be of some help to others through this.