John and I were super excited to get a sneak peek at our baby at our 20 week ultrasound. We planned on learning whether our baby was a boy or a girl. Neither of us could wait to find out; we both like to plan way too much. The ultrasound seemed to take a long time, but being our first experience with this, neither of us knew anything was out of the ordinary. The technician told us we were going to have a baby boy, and we were thrilled.
After the technician had wrapped up the ultrasound, we waited a long while for the physician to come into our room. I though he would be happy and excited to share in our news with us. There was nothing happy about him. We were bluntly told that there may be something wrong with our baby’s head or brain, and that we would need to follow up with a specialist. That’s it. No other details, no explanation. We were horrified to say the least. They ushered us into a room where I talked to my primary doctor over the phone. She explained that there were no more details at this time, and that the visit with the specialist would be our next step. We spent the rest of the night wondering what could possibly be wrong. At this point, I still didn’t believe that it could be a big deal.
We were scheduled for a detailed ultrasound at the maternal fetal medicine clinic two days later on May 4, 2011. We were both nervously anticipating seeing our baby again, and praying harder than ever that he would be healthy and normal. This ultrasound was much more detailed, and we even got to see our baby boy in 3D! He looked so beautiful. I didn’t know how there could be anything wrong with our precious future bundle of joy. We again waited quite a while before we were able to speak to a physician.
We had no idea what was coming when we sat down in the consult room with the maternal fetal medicine physician, a genetic counselor, and a nurse. After a brief introduction, we were bluntly told that it is not likely that our baby will live. I can’t even describe the feeling that overcame us. Never had I cried so hard in my life. We went from a state of complete happiness to a state of intense grief in three seconds flat.
We were asked if we wanted a name to put with the diagnosis. Of course we did! The counselor wrote down the word holoprosencephaly on a piece of paper. It looked like a foreign language. I have never heard of this word in my life. We were briefly told that in the first few weeks of development, our baby’s brain did not split into two halves as it should have. There are parts of the brain that are missing or fused together that are essential for function.
As doctors do, they started to go over all of the possible outcomes with us in terms of our baby’s life. It was likely that he may pass away before birth, that he would pass away from the stress of birth or shortly thereafter, or that he would be unable to function on his own as a normal human would. It was suggested that we terminate the pregnancy, but that we would need to do this soon as we were getting close to a point where this was no longer an option.
Being Catholic, we both knew that termination of the pregnancy was not an option. Even if we had not been a couple of faith, I don’t think we could have made that decision, although I’m sure there are plenty of people out there who would have. God blessed us with the life of our baby, and God is the only one who is capable of taking that life away from us if it is in his will. The very first thing we did after that appointment was visit the Church and speak to our priest. He helped us get through the initial shock and assured us that no matter the outcome for our baby boy, God has a plan for him and he will take care of him and of us.
The next few days were full of grief and sadness. We knew we had to tell everyone the awful news, but we did not know what to expect ourselves, so it was extra hard to explain to others. There are so many possible outcomes, and we still have no idea what will happen as each day goes by. These days were filled with hugging, crying, praying, and an inability to think about anything else. Our family and friends were very supportive throughout the process, and helped to make our lives as easy as possible. We are so blessed to have so many wonderful people in our lives.
As the days went by, we became more accepting of this diagnosis and the potential fate of our baby. We comforted each other to the best of our abilities. And we did a lot of research on holoprosencephaly…