Out of all of the millions of things on my to-do list right now, this is at the top. Why? I want to write down everything I remember from Ethan's meeting yesterday before I get too busy and forget. I started taking notes at the beginning of the meeting, but decided to give up before long because I wanted to be "mentally present" and not worried about getting everything written down. Plus, they had the full report to give us, so I knew I could always look back at the specifics. I wanted to remember how I felt during this meeting more than anything else.
Also, a warning... this will be very long and wordy. It is not the "Reader's Digest" version. It is mostly for us to remember, so if you just skim over it I won't be offended. :)
First of all, the reason we decided to have the hospital do an autopsy on Ethan's heart and lungs is because we wanted to give them the chance to study and learn from our experience. After all, HLHS has only been treatable for the past 20-30 years and the way they learned about it was from other people's experience. Ethan's intact atrial septum (IAS) was an even more rare complication of HLHS and we hope that allowing them to do this autopsy will teach them something that can be helpful down the road for someone else. We also wanted to know a little more about why Ethan was born so "healthy" but declined so quickly. We thought it could possibly give us some peace of mind that we did the best we could. Another benefit that didn't come to me until after this meeting is that I thought maybe this autopsy might give Ethan's doctors some peace of mind. Dr. M specifically came to see us the day after Ethan passed away to make sure we were okay. He got choked up talking about working on Ethan's heart while he was declining. He said that Ethan was the first baby he's ever lost in the cath lab. I got the same impression from him last night that this was probably a difficult loss for him too. He obviously didn't love Ethan as much as us, but just as I care for my students on a personal level I'm sure he probably cares for all of his patients and wants the best for them as well. I hope that it helped him to feel good about everything he tried to do for our baby boy.
Before this meeting came, I really wanted to give something to Megan (our hospital coordinator) and Dr. B (our cardiologist). I know they were just doing their jobs, but we really felt like they went above and beyond to take care of us and were with us through all the ups and downs. We got Megan a bouquet of flowers and a card. It was a little trickier to think of what we could give to Dr. B to show our appreciation. I eventually thought of this book.
It is a compilation of stories from President Monson who is the prophet of our church. He has been a leader in our church for 50 years now, and is a wonderful storyteller. And since Dr. B is a member of our church and has been one of the greatest blessings for us on this journey, I though it was perfect. I hope he liked it and that he knows that we think the world of him. He truly is an amazing man. Here is a picture of us with him last night.
The meeting last night consisted of Jeff and I, my parents, Megan, Dr. B, Dr. M (the cath lab surgeon), Dr. H (who was Ethan's pediatrician and is head of the NICU at the hospital), and Dr. M (the pathologist who did Ethan's autopsy). It was an amazing feeling to be there with so many people who knew and loved Ethan. I think that one of the hardest parts about grieving (for me) is meeting new people who don't know about Ethan. Since he is such a big part of my life, I want everyone to know about him. But I don't want to be one of those crazy/awkward ladies who bring things up at inappropriate times. (So if you feel like I already am like that in person... sorry. I'm working on it.)
Anyway..... Here's what we learned.
Everything we were expecting was right on. Dr. B had prepared us well for what Ethan was up against. It was pretty cool to sit in a meeting with 4 different doctors and follow (pretty much) everything they were saying. A couple months ago I made a book on Shutterfly with Ethan's Story. Before we got to the meeting my mom shared it with Megan and the pathologist, Dr M. She was impressed with our level of knowledge on Ethan's anatomy and what we were up against. That made us feel pretty good. (And for the record, we have Dr. B to thank for that.)
Basically Ethan's anatomy was the most severe HLHS they have ever seen. In addition, he had an IAS, which is very rare, so they said that he was the most severe of the rarest of the rare. Did you follow that?
Let me get into more specifics.
1. Ethan's left ventricle was severely underdeveloped. Some HLHS babies have a left ventricle that is just undersized (the left and right should be equal in size), but Ethan's left ventricle was less than 10% of the size of his right atrium. Overall it was 0.2 cm in diameter. Teeny-tiny. We saw some images from his echocardiogram before they started his procedure and it was almost invisible to see on the screen.
2. They also found that Ethan's mitral valve and aortic valve were both closed and scarred over. Dr. M's thoughts were that at some point during Ethan's heart development (before 8 weeks gestation), one of these valves closed for some unknown reason. Then, in a chain reaction of events, the other valve closed and no blood could flow into the left ventricle. Since no blood was flowing into this chamber, it never grew. After hearing that, I realized what a miracle it was that Ethan even survived in the womb. If his heart was improperly developed before 8 weeks, I am shocked that I did not miscarry him. What a blessing he has been in our lives! I am so glad that I was blessed to carry him for 40 weeks. They were some of the best weeks of my life.
Because his left ventricle was completely closed off, blood was pooling up in his left atrium and causing hypertension. (We knew this ahead of time.) This hypertension caused all sorts of other problems for Ethan.
3. Ethan's intact atrial septum grew unbelievably thick to support the pressure from the blood. We knew that it would be thicker than normal, but all of the doctors were in shock when the pathologist told them the actual measurements. A normal atrial septum is about the thickness of tissue paper (less than 1 mm). Ethan's atrial septum was 5 mm thick! That is thicker than the outer wall of a normal infant heart. That's when Dr. M realized why he could not get a hole created in time. He was blown away. And we were suddenly so grateful that we didn't try the fetal intervention in Boston. Trying to create a hole in that super-thick atrial septum while Ethan was still inside me would not have been good for Ethan, or for me.
4. Ethan's lungs were "over simplified." Meaning that he had the lungs of an extremely premature baby. Even if the doctors could have stabilized Ethan's heart, his lungs would not have been strong enough to support his life. The damage was caused because of the left atrial hypertension in utero (which we were aware of before-hand).
What about Ethan's decompressing vein? Do you remember how we were watching and measuring that vein ever-so closely? That was supposed to be Ethan's life-line, but it turned out to be too small to overcome all of the other difficulties that he was up against. The pathologist measured it at 2 mm in diameter. Dr. B's best guess was that it needed to have been at least 5 mm in diameter to support the blood flow necessary to keep Ethan alive.
So in summary:
Everything that needed to be bigger was too small, and everything that should have been smaller was too big. Ethan's doctors did everything they possibly could have done. We made the best decisions we could have to give Ethan a chance at life. But his anatomy was just not capable of supporting his life.
We've talked with our families a lot about how we feel that Ethan's purpose in this life was to just gain a body. That's all he needed to do here. My dad commented that, "He must just be so special that he was needed back in heaven more than he was needed here." Jeff then said, "Well I wouldn't mind if our next child is just mediocre." Hahaha... But in all seriousness, we do believe that Ethan had something more important to do in heaven than what he could have done here. I can't wait to find out what that is. And we know that we will get the chance to be his parents after this life. I can't wait for that too.
We love you Baby Boy! We miss you everyday!