On October 11th, 2012 Melissa and I visited Dr. Nakasha, our maternal fetal imaging medical doctor, for a routine high definition ultrasound of our baby. We were at 20 weeks of gestation (almost 5 months). Dr. Nakasha started the fetal ultrasound after a few polite introductions. The first few minutes seemed very routine. She commented that Lucas was very active and appropriate size for his gestational age. After a few more minutes examining Lucas she grew silent and started to look puzzled. She asked "have you had any imaging screenings yet?" Melissa replied "just some very basic screenings for gender and placenta location. Nothing very detailed." Her question alarmed me. She continued with the ultrasound for several more minutes before I interrupted by asking "is there a problem?" She replied "well, I'm just trying to figure out if your son is upside down, and laying on his back or his front. For some reason I am having difficult time." She was very quiet for the next few minutes. My concern must have shown in the expression on my face because after looking at me, Melissa began to cry.
After examining Lucas for a total of about 15 minutes, Dr. Nakasha said "there is a problem and I need to refer you to Stanford, UCLA or USC Medical School for a more detailed exam." Melissa and I were overcome with grief. I yelled across the room "I am not leaving this exam room until I have some answers." Dr. Nakasha repeated that she was not qualified to give definitive answers about the nature of defect and that we should seek out a more qualified institution. Getting a bit more angry, I said "if you can't tell me what's going on you better make sure we have an appointment at a major teaching hospital in the next week." Dr. Nakasha left the room. I wasn't sure if she was calling Stanford or calling the police. When she returned to the exam room, I politely pressed the doctor for details about Lucas.
Reluctantly, she gave me her initial diagnosis:
Reluctantly, she gave me her initial diagnosis:
- aspleenia (no spleen)
- twisted bowel
- liver and stomach on the wrong sides of the body (partial situs inversus)
- dextrocardia (heart rotated 180 degrees)
- vetricular inversion (ventricals swapped sides)
- atrial inversion (atria swapped sides)
- ventricular septal defect (huge hole in the heart between lower chambers)
- atrial septal defect (huge hole in the heart between upper chambers)
- pulmonary atresia (one of the two largest arteries poorly formed or not formed)
- DORV (both major arteries out of one ventricle instead of one out of each)
Before she left the room, I asked her if she had seen anything like this before. She said “once, but it was a very long time ago. This is extremely rare. Somewhere around one in a million.” I replied “could you be wrong, or could something be wrong with your machine?” She replied “I don't think so.” I asked “what does this mean? Will he survive? Can he have a normal life? Is Melissa in any danger?” She said “I don't know. Your questions will be better answered by doctors who see this type of case on a more routine basis. I don't think your wife is in any danger. Right now your son is happy and healthy because he is dependent on your wife for circulation, nutrients, and oxygen. As I see it, things will get very complicated after he is born.” I asked “is there something we can do? What do we do from here?” She replied “it's entirely up to you. Termination of pregnancy is an option, as well as many other choices you can discuss with the specialists.” She was clearly nervous and not prepared for something like this. In hindsight, I should have been less intense with her. But, Melissa and I had just heard the 2nd worst news an expecting parent can hear. “There are multiple life threatening defects in your baby.” We were a bit on edge. I said “ok, I understand. Please do whatever you need to do to get me in front of a doctor who can give me some answers.” She said Stanford, UCLA, and USC may have a backlog of appointments and that we may have to wait. This was not an option. It's not like I needed an ingrown toenail treated. Again, I pressed the urgency of the situation. She asked if we preferred one institution over the other. I replied "we need to have an appointment with the best possible doctors. It's ok if that means Japan. Just get us to the best doctors in the next week." We left the office with an appointment for USC Medical School in four days.
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