written by Suzanne Sprecher, Ruby’s mom

Our daughter, Ruby, was born on August 1, 2005. She was two weeks early and it had been a hard pregnancy. We had done everything as first time parents would do — “just right”!

We had been seen throughout the pregnancy and had many ultrasounds, seven to be exact. And we never dreamed once she could possibly have anything “go wrong.” The delivery was tricky and I was kept at the hospital an extra day. My sweet baby was perfect and doing well, but I was not. After an extra day in the hospital, I was cleared to head home, and then a doctor on rounds came in to tell us “Hold on, there is a cardiologist coming.”

We could not believe our ears. Our 4-day old daughter was diagnosed at that time with a Perimembranous Ventricular Septal Defect. They had heard a thunderous murmur on her final check before going home. We were sent home knowing very little other than our perfect baby had a “defect” and to watch that she does not turn blue or stop breathing.

Hearing that word “defect” seemed like the most horrible word ever. We started hearing statistics that 1 in 100 of all babies are born with a heart defect, more than half of children born with a defect will require at least one invasive surgery in their lifetime, so on and so on. There is little known about the cause of the 40 plus types of CHDs and no known prevention or cure.

Cardiologists saw us when Ruby was two weeks old and then we were told to come back every few months. And then every six months. When Ruby turned 2 1/2 on a cold February day, we went for our check up. We had always been told that this particular “defect” rarely needs surgical measures and that as long as she remained symptom-free, she was free to live as full of a life as possible with no need to restrict her in any way. At this appointment, the doctor was surprised, as were we, to understand that there was evidence of a subaortic membrane formation, which is scar tissue forming near her aortic valve.

This was crushing news. Doctors told us that open-heart surrey was inevitable. We debated how long to wait to have this surgery. We didn’t want to wait long and the surgery was completed a few months later in July of 2008, three weeks before her third birthday. She spent only a few days at Children’s Hospital in Omaha, handled it all like a rock star and was running within a few days!!

Ruby, who is now age nine, continues to thrive. She loves to dance and play softball. She is seen only once every five years by the cardiologist because she is doing so well.

We are also proud to help Heart Heroes bring the Superhero Heart Run to Des Moines, Iowa. We have made such a connection with this group and know that other CHD families in Des Moines and Iowa would benefit as well. We have our team set up and are looking forward to flying in our superhero capes that day!!

We are a dream come true heart story and Ruby is MY Super Heart Hero!