22-Week Ultrasound Follow-up

Today we had another ultrasound with the UCSD Genetic Specialist so we could check the status of Samuel's internal organs. It took about 45 minutes and this visit was definitely not as uncomfortable as the last one. Both Dan and I were much more at ease now that we have digested the information of his condition over the past 4 weeks, but there is still not a day that goes by that we don’t hope and pray for some tiny, perfect miracle to transpire that can fix our little boy. Today’s findings in the ultrasound were similar to what was found 4 weeks ago. His heart is still strong but there may be an AV canal defect or a hole in his heart (still not conclusive), his kidneys and bladder are still enlarged and his neural tube defect is still pretty extreme but not life threatening. Samuel seems to have stabilized for the most part but his growth seems to be slowing. 4 weeks ago he was about 2 weeks smaller than his real gestational age. Today, he is almost 3 weeks smaller then his real gestational age. They determine this by taking measurements of the cranium, humerus and femur. From my research, this is pretty common for Trisomy 13 babies.

The biggest thing that came out of today’s session was our follow-up discussion with the doctor. Of course, she was very frank about his grim chance for survival. But the shocker for me occurred after I asked when we'd have another follow-up visit to verify his true heart condition or severity of his other organs. Her response, “No more follow-ups are recommended at this point because we essentially know the outcome of his life and what would truly be the point?” Not the best bed-side manner I felt. She said if having follow-up visits and further in-depth ultrasound scans would put our minds at ease then we could continue, but it would not based on the doctor's recommendation. I was shocked because I thought doctors would be all over this type of thing, wanting to watch him closely week by week since he is so high risk to pass at any time, but it’s quite the contrary! This hit me pretty hard. She did recommend follow-up visits to monitor my health (there is a risk I may develop preclampsia) and to check Samuel’s heart beat every two weeks. And now its seems the rest of my pregnancy becomes a waiting game and it is not sitting right with me.

Next week I will have another check-up with my regular OB and I have decided to talk to her about my options. I think I will ask for more ultrasounds of my sweet Samuel since there are so few chances I have to see him. I have always looked forward to these types of check-ups in the past and just because we now know he has a chromosomal defect does not change my longing to see him and know his current condition.

Another major discussion topic that came out of today's session was the doctors recommendation to not monitor the baby if/when I go into labor. Basically, if there are any complications during labor and the baby goes into fetal distress, we would let nature take its course and not put me through an emergency C-section. I hadn't even consider this. It really was too much for us to think about at that moment and we are not anywhere close to making this decision yet. I thought monitoring the baby for any labor was such a typical thing but I learned today it is definitely a mother's and father's choice.