My husband and I were very excited when we discovered we were going to be adding a third child to our family. My pregnancy was very much like my other two. When we went for our 20 week ultra sound we were very excited to find out that we were having a girl! At my next doctor’s appointment, we were told that the baby had an enlarged kidney and they would want to monitor it throughout the rest of my pregnancy. After the birth, the baby would need to see a specialist to determine the problem. Throughout the rest of my pregnancy I had several ultra sounds all indicating the same thing; everything looked good except for the kidney.
Eden made her debut into our family in December 2008. The nurses and doctors examined her and pronounced her to be a healthy baby girl. The only abnormality they found were small ear tags. When I looked at her, she appeared slightly purple in color. The nurses assured me that this was bruising due to the abruptness of her birth.
When we went back for her one week check-up, Eden had not gained any weight. The doctors decided to monitor her weight gain more closely so we brought her for weekly check-ups. Eden continued to have no successful weight gain even though she was eating on a regular schedule.
At Eden’s one month check-up our pediatrician heard a heart murmur. He told me this is often common in newborns; however because we have a family history of Ventricular Septal Defect (commonly known as VSD) he recommended an Echocardiogram (Echo) just to be safe. I went into the Echo with a false sense of security since nothing had been detected up to this point including all pre-natal ultra sounds.
I went on my own to Eden’s Echocardiogram appointment; not prepared for what was to come. I knew within minutes of seeing the Echo that something was wrong. I was asked a series of questions and was told that we would be contacted by a pediatric cardiologist who would go over the results of the scan with us. Within hours we were contacted by our pediatric cardiologist, and our daughter was diagnosed with Complete Atrioventricular Canal Defect (CAVC/AVSD).
The pediatric cardiologist asked us another series of questions stating that this defect is most common in Downs Syndrome babies. We explained that we had no indication from our doctors that this was Eden’s case.
The news was unexpected and extremely overwhelming for us. Our family was now faced with making decisions on our daughter’s health care and we had no clue where to start. After much prayer, thought and advice from members of the medical community and our family, we determined that the best option for Eden was to take her to Children’s Hospital of Philadelphia (CHOP) for her procedure and have Dr. Thomas Spray, perform her surgery. When we attended out pre-op appointment, we met with Dr. Geoffrey Bird, who would be Eden’s cardiologist during her stay at the hospital. After speaking with Dr. Bird and reviewing her history of her enlarged kidney and her ear tags, we decided to have genetics tests performed on her to be sure that there was nothing else we were missing. After the genetic tests came back they said that had ruled everything with the exception of one disorder, so one additional test would be required. So off we went to the pediatric ophthalmologist. Once all tests were completed, we were over joyed to hear that despite all of the indicators Eden didn’t suffer from any other conditions.
On Eden’s two month birthday my husband and I walked down the hall and handed out baby girl to the surgical team that would perform her open heart surgery. When Dr. Spray walked into the room earlier than we expected our hearts dropped before he could tell us everything was fine. He informed us that due to the formation of the valve he opted to allow a small leak between her newly constructed valves. He explained that he did this because closing the valves completely could cause the valves to grow tighter as she grows which would cause cyanosis (appearance of a blue or purple coloration of the skin or mucous membranes due to the tissues near the skin surface being low on oxygen). Eden was a champ and had a very speedy recovery in the hospital. We were able to take her home on Monday, just five days after her surgery.
We were later told by a member of the nursing staff at CHOP, that we had the “dream team”. It turned out that we ended up with the #1 surgical staff in the hospital. Some may call it luck, I call it divine intervention. We were truly blessed to have such a wonderful team of doctors and nurses caring for our daughter!
Eden is now five years old and doing fantastic! She continues to be monitored by her cardiologist every six months to ensure that her heart is tolerating the leak that still exists.