More Bad and Good News

To start off with something good today we had the echocardiogram performed. The Doctor who was scheduled to see us got stuck on another case and a coleague was brought in to review the films. The funny thing was the new Doctor was not upto date on Becky's condition and spent an extra 20 minutes reviewing the films and thinking he had to break the bad news to us of the diaphragmatic hernia. He was quite relieved to know that we were already aware of everything. I bet he was glad he was not walking into tell us all of the bad news. So he felt good to tell us that everything with the heart is good and satisfactory. Normal size and shape with the valves working good.

However good this news was it was not good enough to beat the bad news.

The fetal MRI was reviewed by Dr. Twickler (a specialist who has recently completed a study on children born at Parkland with CDH). She was able to calculate and measure the space of the size above the diaphragm and to locate all of the organs that are placed in that area. She discovered that the heart is fully located on the right side with lung development occuring on that side. The stomach and small intestine are located above the diaphragm. The key measurement of survival in these instances is based on the placement of the liver and the amount of its inclusion. If 20% or more of the liver is above the diaphragm the chance of survival are nill. In our case it was found that 16% of the liver is above the diaphragm. This puts our chances of survival at 10 - 20%. It was also noted that development of the left lung could not be seen on the MRI (not a pleasant item to hear at this point).

Both Becky and I are faced with several decisions: terminate the pregnancy, continue with the pregnancy, pursue experimental surgery in San Francisco, or explore other forms of aggressive treatments.

With the fact that Becky feels little JJ moving around (which I have felt too) and seeing his heart beating we have decided that it is not our place to play God and terminate the pregnancy at this point. If JJ is one of the survivors of this his life could be healthy and limited in only certain apsects. Had things been different in the earlier tests we may have thought differently. We will leave the decision of life in God's hands at this time. Though we both struggle to understand the cards we have been dealt we both stay united in our decisions. We have made a pledge that once JJ arrives we will spend every minute of time that we have with him. Becky will even try to enjoy every elbow he throws and every knee kick he makes. Though she does have some issue with him jumping on the bladder.

We have an appointment with Dr. Horsager on Aug 1 to determine the rest of our options. I ask that you keep us in your thoughts and prayers as we venture down these tough decisions.