Our Story

Our journey starts in a place where dreams come true. We were on a lovely trip in Disney World with our two kids, Nathan(7) and Delilah(2), when the symptoms started. Surely this couldn't be number three. We had tried for over a year and a half with no success. It couldn't be happening now. I had just restarted school online to obtain my BSN and we had finally moved on from the idea of a third child. Yet, our dream did come true, number three was on its way.

We had decided this time around we had to know if it was a boy or girl. So on the day of our anatomy scan, we were overjoyed to hear it's a girl! We informed our family and friends and started to think of the many possibilities of names. During the ultrasound Dr. Robichaux had quietly counted the chambers, but finally gave up due to the fact that she would not cooperate. He reassured us that everything was probably fine, but a follow-up appointment with cardiology would be just for good measure. We wrote off all bad possibilities and moved on. This pregnancy was going so smoothly.

At 20 weeks, I had my first fetal echo and after flipping and flopping and attempting to get good pictures, an hour and a half had passed and the pediatric cardiologist finally gave up. He didn't want to take away all hope due to the difficulty of the scan, yet he was pretty sure she had either one ventricle or an av canal malformation. I walked to Dr. Robichaux's office in a gaze and lost it after seconds in his office. Dr Mulder, the pediatric cardiologist, had already called and told him of the findings.We waited 2 weeks for our second ultrasound and Dr. Mulder confirmed the diagnosis. It is HLHS. I lived in a fog for the first 4 days, with crying spells and sheer exhaustion.

After a few days, the research process started and we hit the ground running. We reached out to other families and have found angels in disguise. We are debating where is the best place for treatment of her heart condition. We do not want any regrets and this is our chance to give our baby the best possible fighting shot. We finally decided on Children's Hospital of Philadelphia (CHOP).  So many doctors and HLHS families convinced us it was the best place.

For those who have not heard of HLHS, it is one of the most severe congenital heart defects. It is where the left ventricle that pumps blood from the heart to the rest of the body does not develop correctly for one reason or another. Think of it as though only half of her heart is working. She will have to have at least 3 open heart surgeries, and a tough recovery. The first surgery is at 5 days of life, second at 6 months and the final is at 3 years old.  Once a child makes it past their final surgery there life finally becomes more normal.  While they get winded faster and are skinnier than the other kids they have a pretty normal life after this.  There is always the chance for other surgeries down the line but the final surgery is like winning the marathon.


Please read our blog, we are finding out more and more all of the time.  And please attend our fundraiser, it will be a wonderful event.