Victoria's Story

Victoria Kristineve Schiro was born on 12-24-04. She was born 3 weeks early with a good weight size of lbs. 3 oz. Due to my CHD, my pregnancies were monitored very closely. In our third trimester we had learned that Victoria had a very large VSD (hole in the lower chamber of her heart), and pulmonary stenosis as well. She was expected to be blue at birth, so we were thrilled when she turned out to be pink. At birth we learn that she had tetralogy of fallot. Which is a disease that affects 4 areas of the heart. She had an ASD (hole in her upper chamber), a VSD, narrow pulmonary artery, smaller pulmonary valve and some thickening in her lower chamber. Her pulmonary valve was overriding her VSD as well. Victoria's condition was the same as my sister who passed away at 3 months of age. Following her birth we noticed some difficulty with her breathing heavy and chest pulling. So, one week after Victoria was born she was put on lasix^® to prevent her heart from too much water retention. At four months of age Victoria was only 11 lbs and that is when her Doctors knew it was time for her surgery. They it failure to thrive. She was not gaining the weight that she was suppose to be gaining. Victoria under surgery at Children Hope Hospital when she was only 4 month of age. For her surgery they patched her VSD, closed her ASD and repaired her pulmonary artery by taking the lining from around her heart to repair her artery. Her surgeon felt it was best to leave her pulmonary value alone and see if it grows with her.

Now Victoria is a happy fun loving little 2 year old who is full of life. She loves to make her older brother Cameron and older sister Alexis laugh by doing goofy things. Looking at Victoria one could never tell she is a heart baby. Victoria will probably need a pacemaker and a defibrillator in the future. Unfortunately with my family history Victoria carries the gene with a defect that causes the Tin Man syndrome. The Tin Man was given its name, because when the gene was reproduced in a mouse the mouse was born without a heart. Just like the tin man in the Wizard of Oz. This means she will have a life long history with her heart. The Tin Man as well as affecting the structure of the heart also causes conduction problems which can lead to sudden cardiac death if not treated. This means that she will be monitored throughout her life.

— Victoria's story was written by her mom