At today's appointment I got to meet the surgeon that will be operating on little Alli when she arrives. Steve could not get work off, so my mom came along with me instead. We checked in at the office after navigating our way through the Sacred Heart Children's Hospital at about 12:30. After a short wait a nurse brought us back to the room where we would consult with the surgeon. She informed us that the wait could get a little long because he was just finishing up with a surgery, but it did not seem too long at all.
When he came in he seemed very friendly and caring, but he also got right to the point. I liked this a lot. He explained what he knows about CDH cases and then allowed us to ask questions. It turns out that he has just recently moved to the Spokane area and started work there at Sacred Heart. He has dealt with 100's of CDH babies and is actually a founder of the National CDH Doctor's Study Group. How perfect is it that a Pediatric Surgeon with such an interest in diaphragmatic hernias would start working at Sacred Heart right at the time when I need him?!?
Due to his past experiences he informed me that he would not be comfortable doing the surgery here at Sacred Heart where ECMO technology is not available unless the ultrasound showed two things - High LHR and Liver Down. When CDH is the only problem a baby has (good heart, no chromosomal defects, etc.) which we have discovered to be Allison's case, the severity and, thus, outcome is determined by two factors: 1) liver position, and 2) lung-to-head ratio or LHR. Liver position refers to whether or not any portion of the liver has herniated, or gone up into the chest of the fetus. Fetuses with the liver up in the chest have a more severe form of CDH and a low survival rate. About 75% of all CDH patients have some portion of the liver herniated into the chest. The lung-to-head ratio, or LHR, is a numeric estimate of the size of the fetal lungs, based on measurement of the amount of visible lung. High LHR values are associated with a good outcome. Fetuses on the best end of the spectrum do not have liver herniated into the chest (liver down) and have a high lung-to-head ratio (LHR greater than 1.4) Only about 25% of CDH babies are on the best end of the spectrum (liver down and high LHR), and they all do well after birth. If Allison is one of these 25% then she will not require the assistance of ECMO, and though still requiring major surgery, will do very well and have no long term affects from the CDH.
He, in his short time at Sacred Heart, has already started developing an ECMO program that will likely become available sometime next year---but that is a little too late for us. He said he is not one to take any risks and even if she is likely not to need ECMO he wanted it available to him unless she fell into this specific best end of the CDH spectrum. I told him that I believed she did based on our last appointments, but that I would get the information sent to him after the ultrasound scheduled for right after this meeting. All in all I really liked Dr. Georgeson and am very glad to know that someone with so much experience with CDH will be handling Alli's case.
Next we headed over to Fetal Medicine for the routine check-up. First they checked on me - weight, blood pressure, questions, concerns, etc. Everything is right on track! Next was the ultrasound. I informed the tech that Dr. Georgeson would be needing the information about her liver position and LHR so that she could pay special close attention to those two things. After she finished the Fetal Medicine Doctor came in and said that all of Allison's growth looks great! She is now 2lbs and developing perfectly. He informed me that her liver has not herniated and that she looks to have a large amount of lung space still available. Woo Hoo! He told me that they would get the information over to Georgeson and gave me a slip to schedule my next appointments.
On my way out they handed me an orange glucose drink that I am to drink the next morning and head into a lab to have blood drawn for the usual 25 week pregnancy glucose tolerance test. I don't expect any issues with that since there are no signs of an issue in any of the usual pregnancy screenings. My next appointments are set for the 23rd. They informed me that after that the appointments will be back to every two weeks since I am at risk of developing polyhydramnios (too much amniotic fluid) with a CDH baby. My levels are perfect now but it can change quickly so they want to keep me monitored because it can cause baby to come too early which is very dangerous for CDH babies.
Overall the days appointments went really great once again! No bad news, and another promising set of measurements. Plus, finally some input from someone who has lots of CDH experience.