Where it all began...

Our lives were forever changed at a follow up appointment at our perinatologist's office on a January morning.  We thought we would be there for a quick check as our baby had already had a full anatomy scan four weeks prior and was deemed normal. After a few minutes of scanning our doctor, Dr. Kfir, came in and told us he had some concerns about the baby's heart. It's hard to explain the feeling when someone tells you something is wrong with your baby but I don't wish the feeling on anyone. I tried to remain positive as Dr. Kfir continued to scan. After another hour of scanning, he informed us that our baby had a very complicated heart defect. He actually wasn't even sure what was wrong, he just knew something wasn't right with the baby's two main arteries. He told us we need to do an amniocentesis right away to figure out if the baby had one of the genetic syndromes that are sometimes associated with these type of heart defects. Through lots of tears we met with the genetic counselor who informed of all the unimaginable possibilities. The word termination was uttered so many times that looking back I am not even sure how I ever walked out of that office. Dr. Kfir told us that kids with similar heart defects have a 50-70% survival rate given no other genetic conditions.

We left the perinatologist and headed straight to an emergency appointment at CHOC (Children's Hospital Orange County) with a fetal cardiologist. We met with the most wonderful Fetal/Pediatric cardiologist Dr. Nita Doshi. She performed a fetal ECHO (heart ultrasound) on the baby for over 2.5 hours. She didn't say much while she scanned and I knew it wasn't going to be just a small hole in his heart. She sat us down and began to explain our baby's heart to us. So here goes...

Our baby has three congenital heart defects: Double Outlet Right Ventricle (DORV), Transposition of the Great Arteries (TGA), and a large Ventricular Septal Defect (VSD). To read more about his specific condition click here DORV. In layman's terms our little guy has both his aorta and pulmonary artery on the right side of his heart. Normally blue blood (deoxygenated blood) runs from the right side of the heart to the pulmonary artery. The pulmonary artery then takes the blue blood to the lungs where it becomes oxygenated or red blood. The red blood returns to the left side of the heart where it is pumped to the rest of the body by the aorta. The problem with our little guy's heart is that the two systems our not separate so the red and blue blood will always mix and his heart will have to work twice as hard to provide enough oxygenated blood to his body. In utero he is doing really well because my placenta does most of the work, but once our little guy is born is when he will start to struggle...

A Normal Fetal Heart:

 Our baby's Heart:

After a lengthy consult with Dr. Doshi, we were told that they couldn't help our little guy at CHOC and he would need to have surgery at Stanford, Columbia, or Boston Children's. She also reiterated that we needed to know what else we were dealing with and an amniocentesis was imperative.

The next morning we headed back to Dr. Kfir's office for an amniocentesis. The amniocentesis was scary enough but not as bad as having to wait two weeks for the results. This was the longest two weeks of my life. I am forever thankful that I have two crazy other kids that kept me as busy as possible as we waited. Then I got a phone call from the genetic counselor that all tests from the chromosome analysis and microarray were normal. It was like a giant weight being lifted off our chests. Now Brad and I knew this guy had a chance and it was time to fight for him!