Fetal Echo & Pediatric Surgeon Consultation at Stanford

Today, November 18, Greg & I drove over to Palo Alto to begin our two days of appointments and consultations. We dropped Kyler off at Natalie's house in Walnut Creek along the way. Our first appointment was for the fetal echo and it was scheduled for 1:30 pm. We arrived at the hospital just before 1, got all checked in, and headed to the Heart Center. We were a little early so we just waited until they were ready for us. Olga, the technician, called us back shortly before 1:30 and started the echo. She didn't really say anything to us and Greg & I just watched the screen quietly, trying to make sense of what we were looking at. After about 10 minutes, three more people came in the room and were asking us who referred us to Dr. Reddy and if we were the "AV Canal" patient. We had no idea who these people were or why they were asking. We finally figured out that the main doctor was Dr. Norman Silverman. We found out later from the pediatric surgeon that he is apparently the doctor who started fetal echos and is the expert in the field. He spent the next 20 minutes or so in the room with us (and the two additional onlookers) commenting on what he was seeing on the screen. He said from everything he could see, there were no congenital heart defects and no heart disease. Greg & I were stunned to say the least! This is a huge change from what we had been looking at. Dr. Silverman said the aortic valve looked completely normal, the mitral valve looked completely normal, he couldn't see any sign of VSD. When I asked him about the fluid around the heart that Dr. Barth had mentioned during the ultrasound, Dr. Silverman said that is also completely normal. He said from everything he could tell, the only issues with the heart were related to the congenital diaphragmatic hernia (CDH). He said the CDH is what caused the heart to be tilted to the left and why the left side is smaller than normal. But, he said even with the left side being smaller than normal, he didn't think that was going to be a problem. He said normally children outgrow that and the heart develops perfectly normally.

We questioned him about the details of what he was looking at and he asked Olga to look at various things on the echo that he wanted to look at. And, with each thing, he kept reiterating to us that everything looked normal to him. When we asked him how confident he was about this he first said 99.5% sure and then he said 99.9% sure. It's hard to get any better than that! He said sometimes heart defects are misdiagnosed in babies with CDH simply because the heart is in a different position than normal and it's hard to get a good view of everything. And, he said it's possible that the defects were there but have resolved themselves. Either way, he was very sure of himself saying that there was no heart disease. Olga finished up the echo and we were on our way. We left the heart center in shock because we couldn't believe what good news we had received. Of course we were still a little skeptical because we didn't have any frame of reference as to who Dr. Silverman was and what his specialty was.

As soon as we left the heart center, we got a wheelchair for me and Greg pushed me across the street and down a couple buildings to meet with Dr. Craig Albanese, the Pediatric Surgeon. Our appointment was originally scheduled for 3:00 pm, but they had called and asked if we could come to their office any sooner. We ended up getting there right around 2:30 and Dr. Albanese saw us immediately. He was very friendly and easy to talk to. He ended up spending about 45 minutes with us, giving us information and answering questions. We first talked about what Dr. Silverman had told us and that is when Dr. Albanese told us who Dr. Silverman was. He said he is the one who really started doing fetal echos and is probably the most qualified expert on the subject. When we told him that Dr. Silverman said he didn't see any heart disease, Dr. Albanese took that very seriously and said it was probably true. He had complete confidence in whatever Dr. Silverman told us. However, that being said, he asked if we had another fetal echo scheduled with our cardiologist at home and we told him we had one this coming Tuesday. So, he said he would definitely be interested in finding out if that echo showed the same thing, but he would be surprised if it didn't.

Then we started talking more specifically about the CDH. He had talked with Dr. Barth and seen the MRI results which he said made him "cautiously optimistic" about the severity of Caden's CDH. He said in the case of a small hole, it would probably be easily closed with existed diaphragm tissue and that would take care of it. He said most typically with a right-sided CDH, they open up the chest and push the liver down. He said the liver is easy to split, so opening from the abdomen and pulling the liver down doesn't typically work as well. And, the possibility of laproscopic surgery is more difficult with the liver because it is hard to pull the liver down with smaller instruments. He said usually a hand pushing it down is the best option. But they make the decision for the type of surgery on a case-by-case basis.

We talked about what to expect once Caden is born. He said the Neonatologist and a team would be in the delivery room with us and as soon as he comes out, they would whisk him away and assess him. Based on what they found, most likely he would be put on a ventilator and moved to NICU. He did say a very small number of babies born with CDH do not have to be put on ventilators, but they usually make the assumption that they do because it's easier to take a tube out than it is to find out too late that the baby isn't getting enough oxygen to the brain, etc. Then once Caden is in NICU, he will be continued to be monitored for the next few days while they determine the best time to do surgery. Dr. Albanese said it is almost never before three days and sometimes it's much longer than that. It just depends on the baby and the situation. He said 70% of the surgeries they do for babies with CDH are done in the NICU as opposed to taking them down to an operating room. They feel it is must less risk for the baby that way so they don't run the risk of destabilizing a baby that is doing well in NICU during transport to the OR.

We asked about when we would be able to hold Caden and again, he said that really depended on how he was doing. He said it could be as early as the same day of birth, or it could be a couple weeks. But he said the doctors and nurses are very sensitive to the parents and want to encourage bonding as soon as it is "safe" for the baby. Any kind of touch or outside stimuli too soon could be detrimental to Caden's health. But they do want parents to be as involved as possible.

The other thing we talked about was whether or not we really needed to deliver at Stanford if Caden's heart is fine. Dr. Albanese said it really depends on our comfort level. He recommended talking to all the doctors tomorrow (CardioThoracic Surgeon, Perinatologist, and Neonatologist) to see what they recommended. And, in addition to that, we should talk to all our doctors back in Sacramento/Roseville and see what they thought.

Overall we were very happy with our meeting with Dr. Albanese. He was very generous with his time, didn't seem in a rush to get us out of his office and was willing to answer any questions we had. We left there feeling very positive about Caden's status. It also really helped us have more confidence in Dr. Silverman's assessment of Caden's heart. Since we had no frame of reference as to who this doctor was, it was nice to have more background information on him. And, we will be seeing Dr. Reddy, the CardioThoracic Surgeon, tomorrow morning. Dr. Silverman said he would be letting Dr. Reddy know exactly what he saw, or in this case, didn't see. And, we will see what Dr. Reddy has to add to the discussion regarding Caden's heart.

Once we were all done with our appointments for today, we decided to stop by Ronald McDonald House and see if we could have a little tour just so we could familiarize ourselves with and know what to expect. It is a really nice facility and they have 47 units available. They provide breakfast every morning which was a surprise to us. And, four or five nights a week they also have dinner. Different organizations come in and provide those services. The rest of the time, the kitchen is available for personal use and cupboard and refrigerator space are made available for each unit. They have an activity room for young children, a computer room with eight computers as well as digital cameras you can check out for use. It just seems like a really nice place. I think I could handle staying there for awhile, as needed. Of course that will depend on whether or not we end up delivering at Stanford or not. We still seem to have unanswered questions...

We are feeling incredibly blessed right now. We are praising God for the good news we have received today and have continued to receive throughout this pregnancy. But we ask for your continued prayers as we face another day full of appointments and consultations. It's an overwhelming experience and we still need God's help in deciding the best place to deliver Caden.