UCSF Appointment

UCSF emailed me my agenda for today's appointment. I have a fetal echo at 10am, an ultrasound at 1pm and then meet with the doctors at the Fetal Treatment Center when complete.

The fetal echo was similar to the one I had at Stanford. It took a while for the tech to get all the views she needed for the doctor. Finally the cardiologist came in and briefly said "Baby's heart looks good, just squished" and left. Remember I still haven't had a doctor sit and have a one on one conversation with me about this defect and what all these things mean. I figured since I was going to meet doctors today that I would get that chance so I took what he said and ran off to my next appointment. The ultrasound went as normal. The tech had to do all the measurements again that had already been done at the high risk office and Stanford and I was patient. I was glad that they weren't making me do another MRI today because these appointments were taking a long time and I was feeling tired by now. After the ultrasound I went to the Fetal Treatment Center and was sent back to the ultrasound because the doctors wanted to see something. This time the doctors were present in the ultrasound. They were looking at the space between the baby and the placenta to see if there would be room to safely to perform fetal surgery. The space was very narrow. After we all went to a conference room (me, my mom, the ob/gyn, and one of the pediatric surgeons). The ob/gyn took the time to draw a diagram on the board to show me what is taking place inside my baby. FINALLY someone is talking to me in detail. I knew most of the info he was telling me but it was nice to have a professional tell me rather than reading stuff off the internet. What I didn't know were MY baby's stats. I was told that baby has an LHR of .74 and that baby's with LHR 1.0 and above have a 50% chance of survival, and baby's with LHR of .6 or below never survive. So my baby is somewhere in between. This news and the fact that baby has no sign yet of a left lung and barely any right lung wasn't good, however, I still see hope for survival!

The pediatric surgeon spoke up about my options. I had made it clear that I didn't want to terminate so we didn't even discuss that as an option. She had mentioned comfort care. Basically they would do whatever to keep the baby comfortable and not put him on machines, etc. to fight for his life. She mentioned that sometimes we go through everything we can to keep these babies alive and it still doesn't work. And even if the baby survives, it may not have a good quality of life. I took in everything she said but knew in my heart that I just wouldn't be able to live with myself if I didn't keep fighting! Since it was the day before Christmas Eve, there weren't any other team members there to speak with so the conversation fell short and I drove home in deep thought. I kept wondering...."Why is this happening to me?" "Why must I make a decision for another beings life?"