The Beginning

Like yesterday, I will never forget the 3 month well visit to the pediatrician's office, with a head full of questions about our concerns with vaccinations. She examined Max top to bottom, ear to ear and eye to eye then she listened to his heart and told me she could hear a faint murmur. My concerns about vaccines dropped to the bottom of the my list. She reassured me that sometimes baby's are born with little holes, or have valve abnormalities in the heart and the murmur could be nothing to worry about. She referred us to Cardiology to get it checked out. This was the beginning of our Journey with Max and learning of Williams Syndrome.

Max was diagnosed with Williams in July of this year, when he was 15 months old. After follow-up at Cardiology, they did a local testing/ultrasound type exam and they told us it was a valve issue and to visit again in 6 months at Nemours where they could do a thorough echo exam. The results of his heart condition was mild and follow-up again in 6 months. Both me and my Husband were positively optimistic things were OK. The next Nemours echo visit, in May, I was by myself with Max and I was able to get him to go to sleep without them sedating him. They were able to get a good look and get accurate readings. Being I was 4 months pregnant, I was emotional as is, thinking positively everything was good and his heart condition still mild the Cardiologist told me what she suspected was a valve problem is an Supravalvular Aortic stenosis and the condition is connected to Williams Syndrome? To any mother who is told there is something wrong with their baby, your heart melts. She did her best to explain it and draw a picture, being new to the news, naturally, I was in denial and thought "it can be fixed and everything will be OK" Leaving the Hospital room that day, the sincere, heartfelt look and hug the Cardiologist gave me, I now know why she did...