Emily, born 2003

We are very blessed to have Emily.  From the moment we knew I was pregnant, I was put under the microscope because I had lost my previous child when I was only 20 weeks pregnant.  With Emily, we had an ultrasound fright from the beginning. It was a long and scary nine months. Every time I saw a specialist, there was something else wrong.  They found a congenital heart defect and told us that our baby had a 99% chances of having Downes Syndrome. At one visit, they told us to consider terminating the pregnancy.  But being five months pregnant, we felt this would not be right for us. We knew we were having a girl so at least this was exciting. I was on bed rest for the remainder of my pregnancy and one month prior to my due date, Emily arrived.  She was born May 2, 2003.

She was born with an unusual atrial and ventricular septal defect, a cleft mitral and tricuspid valve, and left superior vena cava to coronary sinus without a bridging vein.  She also didn't have Downes Syndrome. She had her first open heart surgery when she was two and half months old at Boston Children's Hospital and was home in seven days. When she was 10 months old, she had to return for surgery as she developed scar tissue which was affecting the pressures in her heart.

On April 4, 2003, Emily had a balloon catheterization to help with her mitral valve.  Procedure went well and they canceled the June open heart surgery. She'll have to have another open heart surgery but we have some time at this point.

We just try to give her a normal life.  It is hard for anyone who hasn't gone through this because she looks healthy on the outside.  Friends and family say she looks fine but we have to tell them that there are a lot of things she may not be able to do physically and it makes us sad.  One the other hand, we are happy she is here with us.

She is our little princess.  She loves tea parties and plays with her older brothers, David and Tyler.  We recently heard from Make-A-Wish and her wish to Disney to have a tea party with Cinderella and her princess friends was granted!

This is only some of her story.  I could write a book but it would never end so in the meantime, we await the next open heart surgery!

Story by Emily's parents, Jennifer & David - MASSACHUSETTS