Matters of the Heart: Learning Our Baby Had a Heart Defect
January 14, 2014 is a day I will never forget. It was supposed to be an exciting, joyous day. It was the day we would see our baby in a level 2 3D ultrasound for the first time and find out whether we were having a boy or a girl. I left work and my husband, Glenn, and I went to the doctor’s office to first meet with a genetic counselor and then have our ultrasound. I had been planning to go back to work after our appointment but I didn’t make it back to the office that day. That day we learned our miracle baby had a congenital heart defect (CHD). Little did we know what a miracle she would truly be.
Our genetic counseling session went fine. There was nothing particularly out of the ordinary in our family histories to be concerned about. But once the ultrasound began, it didn’t take long to realize something wasn’t right. The ultrasound technician told us we were having a baby girl, but then became very quiet and seemed to be really concentrating, going back to repeat the same parts of the ultrasound over and over again.
I could feel myself starting to panic and tense up. I couldn’t stop the terrified tears from rolling down my cheeks. When she left the room to get another technician to take a look I told Glenn that something was definitely wrong, possibly with our baby’s heart. He calmly told me that we didn’t know anything yet and he was sure everything was fine. I continued to panic and he remained calm, excited about the news that we were having a girl. This was one of the few times in our relationship, where my husband’s certainty that everything was fine was very, very wrong.
The second ultrasound tech confirmed that something wasn’t right with our baby’s heart. We immediately met with the genetic counselor and a fetal medicine doc who told us they were seeing some asymmetry in the baby’s heart, it appeared to be on the wrong side of the chest cavity, and that they were also concerned about a chromosome disorder. We would need to schedule another ultrasound and a fetal echocardiogram in three weeks, when the baby’s heart would have had more time to grow so it could be seen more easily in the echocardiogram.
We were devastated. Clearly there was something very wrong with our baby but no one could tell us exactly what yet. I couldn’t bring myself to be happy about learning we were having a girl. The next three weeks were torture, as I describe more thoroughly in the blog post “Baby Girl.” In short, a visit with my OB/GYN after that first level 2 ultrasound left me feeling that there was no hope for our baby to survive.
I started to distance myself from the pregnancy, if that makes sense. I was preparing myself for the worst and couldn’t bring myself to get any more emotionally attached to our Baby Girl than I already was. Her heart was broken before she was even born and I was biding my time, waiting for my own heart to be shattered into a million pieces. It was one of the lowest points of my life.
But then things started to look up (a bit). Between the first level 2 ultrasound and our first echocardiogram, we got the results from a genetic test we had done and there was no longer any fear that the baby would have any of the devastating chromosome disorders that were first suspected. This was an enormous relief, but we were still waiting to learn more about our baby’s heart defect.
Finally, the date of the second level 2 ultrasound and echocardiogram arrived. Up to that point, I had never been so scared in all my life. (As it turns out, once you become the parent of a child with a congenital heart defect (CHD), there are endless opportunities to experience levels of fear you never thought possible.)
The pediatric cardiologist and echocardiogram doctors we met with were amazing and thorough and compassionate. We learned that first ultrasound reading was incorrect, it wasn’t her heart that was in the wrong place, it was the rest of her organs that were misplaced making the ultrasound confusing to read. But there was still something wrong with her heart.
The cardiologist told us that in addition to the baby’s heart defect, she had a condition called situs inverses. As for her heart, at the time it appeared the left side of her heart was slightly less developed than the right and they were having difficulty viewing blood flow in the left atrium. They also were not able to visualize the atrial septum (the wall separating the right and left atriums) very well. The early diagnosis was that Baby Girl would have a complex congenital heart defect known as total anomalous pulmonary venous return (TAPVR). It is a serious heart defect, but one that would hopefully be able to be repaired with surgery either immediately or shortly after birth.
The news was both devastating and encouraging. Receiving confirmation that there really was something very wrong with our baby’s heart was terrifying. And learning that she would have an additional birth defect with her unusual organ placement added yet another level of unknowns to everything we were dealing with already. But knowing that her CHD could potentially be repaired with surgery gave us hope.
The next few months as we awaited her birth were challenging. It was a stressful, emotional time filled with countless doctors appointments that became more and more frequent as her due date drew near. It seemed with every appointment we knew less than we had before. The closer we got to her arrival the more unknowns we seemed to face.
But every time I heard her heart beat during those appointments, I knew she was still okay. And with every kick and punch she gave me, I knew she was growing stronger. She was going to fight this and survive. And we would be there to do everything in our power to help her.
As you all know, Super Millie did survive and continues to thrive. She’s one tough little girl. She truly is our #HeartWarrior. So throughout Congenital Heart Defects Awareness Week, I will be sharing different aspects of her story and ours to help raise awareness for the most common birth defect in America.