Emily was born in April 2006, beautiful and pink. Everything went smooth and normal until she was about nine months old. She stopped gaining weight, we even had blood work done to check her growth hormones but it came back normal. Her pediatrician felt she had a delay in her motor skills so he wanted us to take her to see a neurologist. She would sweat a lot and she grunted when she would reach for something or when she started to crawl but Darin and I thought “That’s just Emily, there’s nothing wrong.” 

We took Emily to see the neurologist in March, 2007. He did a thorough exam and finally said that he doesn't see anything significantly wrong but he did hear a heart murmur. Darin and I were shocked. She is almost a year old and we have never heard of a murmur mentioned before. He than advised us to follow up with a pediatric cardiologist. We saw our pediatrician first and he received the report from the neurologist. He then listened to Emily’s heart and said” Well I might hear a slight murmur, Just to be safe and make sure that there is nothing wrong let’s refer you to a pediatric cardiologist.” I will also never forget that he said” 90-95% you will go there and there won’t be anything wrong.”

Darin and I truly thought in our hearts that she was fine and that there wasn’t anything wrong and that if she did truly have a murmur it would go away as she got older. On May 3, 2007 I took Emily to see Dr. Babu, He of course first did an EKG and then an echocardiogram. While he was doing the echo he paused and said “We have a problem.” At that moment in time my world froze. He started describing what was wrong and that Emily has a large hole in her heart and that she will need open heart surgery to repair it. I kept repeating “open heart surgery??????” He said Emily has a congenital heart defect; to be exact it is an Ostium Primum Atrial Septal Defect with a cleft in her mitral valve.I felt like a basketball slammed into my belly. I was hysterical and completely shocked!!  From Dr. Babu’s office, we were referred to a pediatric cardiac surgeon.

In the meantime before we saw the surgeon we wanted to have another echo sedated, so they could get a good thorough reading to make sure, of everything.  I remember driving home in a complete fog. Darin came home from work early so I had to break the news to him. He was completely shocked also.  We had the sedated echo done at All Children’s and then on May 21, 2007, we met with Dr. Jacobs. He went over everything with us in detail and decided to schedule her open heart surgery on July 17, 2007. I can say that 7/17/07 was the most terrifying day of our lives. She went into surgery at 8:02 A.M and he finished her procedure at 11:45 A.M. everything went very smoothly and she did great. We were able to bring Emily home on July 20.

Again, we really couldn’t have asked for anything to go any smoother. We are truly blessed!! She is doing great. We still see the cardiologist every three months to keep a close eye on her mitral valve. She may need another surgery down the road but we are not sure when. We will just cross those roads when they come. This whole experience has definitely changed our lives, it made us a stronger family and to cherish each day. Thank you for letting us share our story.