On March 3rd, Kathryn and I learned that the new child that we were expecting was a little girl. We pick out our names early (we already have names picked out for a theoretical future son or daughter, stress on the theoretical), so we knew already that this little girl's name would be Lillian Maureen Boer. What we didn't learn until after we left the anatomy ultrasound was that little Lillian had a severe heart defect. The ultrasound tech that we initially thought was being rudely uncommunicative actually had caught the issue and was investigating it. In reality, she had probably saved Lillian's life, as an undetected heart defect can be fatally overlooked. Her initial thought was Hypoplastic Left Heart Syndrome (HLHS), and we were referred to Seattle Children's Hospital Prenatal Diagnosis and Treatment department to further investigate.
At the Prenatal Diagnosis and Treatment department, they did an echocardiogram, which is basically a specialized sonogram of the heart. This test confirmed the initial ultrasound technician's suspicion, Lillian had a hypoplastic left heart. This was a very strange experience, as they took us to a room filled with tissue boxes. They clearly were expecting us to be very upset, and I imagine this would be the normal reaction for the vast majority of people. Kathryn and I had already moved past this stage and had moved on to thinking about what we could do now. We were told we had 3 options. We could either keep Lillian and do everything we could to treat her, we could get an abortion, or we could do comfort care, where the child is born, made comfortable, and then allowed to die naturally (as will inevitably happen with this condition). If you know anything about us, you would know that as far as we were concerned, we had one option. This isn't a politically expedient thing to say, but Kathryn and I are strongly pro-life. Abortion is not an option we are even willing to consider. We also felt that comfort care is an even worse option than just getting an abortion in the first place. Our choice was easy, we were going to fight for her life with every ounce of energy we had.
This is the part where I should take a little detour and direct you to the post that will be following this one about what HLHS actually is, how the heart is different, why it doesn't work, the consequences of it not working, and how we can fix it. It will be much easier to follow my later posts if you have an understanding of the condition, so I highly recommend reading that post if you want the rest of my posts to be understandable.
Knowing what we were going to do from the start made planning for Lillian's arrival much easier. Immediately several changes were made. Kathryn's pregnancy care was switched from UW Roosevelt to the Prenatal Diagnosis and Treatment department, with appointments and echocardiograms more frequently and the pregnancy being classified as a high risk pregnancy. In addition, we had to make plans for the time after Lillian was born, with plans for her to be born at the University of Washington Medical Center and for Lillian to be immediately transferred to Seattle Children's for surgery.
Although we were prepared for Lillian's condition and knew what we were going to do from the start, this was still a very difficult time for us. Knowing that your child has a heart defect is devastating, especially when that defect is a major defect that has a 35% mortality rate even in these times. We've been able to do what I feel is a remarkable job dealing with the situation, but there were still many incidents of sorrow, anger, despair and frustration. It was important for us to accept early on that there was nothing we did to cause the defect and nothing that we could have done to prevent it. It simply was, and we had to accept it. We realized from the start that negative feelings and self woe would do nothing to help our situation. It would only stress us out, and the last thing that Kathryn needed was to be even more stressed during pregnancy. It would also do nothing to help Lillian get better. The support and encouragement and words of assurance from the many friends and family were a huge help during this time.