Fetal echocardiogram results

April 11
Well I went in for my second fetal echocardiogram yesterday.  I left knowing just as much as I did the first time.  I asked the lady doing it a bunch of questions but she said "I am actually not allowed to say anything because it ultimately has to be read by Dr. Ghazali".  He wasn't there to read it that day and so she told me she would have him read it and then personally give me a call.  She felt bad that I didn't hear anything after my first echo.  The reason I didn't hear anything about that one was because it wasn't Dr. Ghazali who read it, they sent it down to Indianapolis to be read and the doctors down there don't make phone calls to deliver the news.  So, the nurse/ultrasound tech (I don't know what to call her, the lady that performed the echo) said she would make sure Dr. Ghazali would call me.  I didn't hear anything until this morning.  Dr. Ghazali said he would have called me yesterday after he read the echocardiogram but he didn't get it finished until 1:30 AM.

Here is what he said:

He started out by reassuring me that we could not have predicted this and couldn't have done anything to prevent it.  Their are a handful of cases (about 5) where they went in and did in utero surgery to prevent this.  But, this is a very risky procedure and has a VERY high fetal mortality rate.

He explained that it isn't just her left ventricles that aren't working, which is all that I had been told.  It is the whole left side of her heart that has not developed well and her heart has more than one level of obstruction.  With the technology of the fetal echo we are able to detect and prepare for this so that when the time comes we can try and fix it.

Right now she is in fetal mode (still inside me) and because of this she is stable.  Once she is born she enters baby mode which make things more difficult because we then have to provide things like oxygen for her.  She immediately go from stable to critical condition once she is born.  The good news is we know this and can plan for that.  We are monitoring her weekly so that we can make sure she stays stable.  If for whatever reason she shows signs of being in trouble we will deliver her immediately (here in Fort Wayne).

His opinion was that we need to deliver in Indianapolis to give her the best chance.  If we were to deliver here we would have to stabilize the baby after she is born and then immediately ship her to Indy to have surgery.  I would be stuck here until I could be discharged, Ethan could go be with the baby but then I would be alone.  Also, we have to think about the weather (for chopper conditions) and maybe not being able to fly her so then they would have to send her 2 hours in an ambulance.  It would be best if we can deliver in Indy where we can all be together and she can receive the immediate attention that she needs.  Dr. Ghazali is 100% sure she will need surgery and it will need to be within the first day or two after she is born.  We just need to plan ahead so we can deliver in Indy.  He said I will need to talk more about delivery specifics with Dr. Wheeler on Monday.

Dr. Ghazali said she probably wont live a perfectly normal life, "she can be an artist or a musician, but she probably wont be the star quarterback.  I am not saying she cant, but probably not."  He said we will take it a step at a time though and right now we need to focus on getting her past surgery.  

He said he has 50 or so children that has a similar condition.  These cases vary depending on severity, but her condition isn't so rare that they don't know what to do.  He didn't want to tell me what kind of surgery she will need.  He said, he will leave that up to the surgeon (so I wont get confused with everyone telling me different things).  He says he thinks he knows what they will do, but will leave it for the surgeon to decide. The fetal echocardiograms are 80%-90% accurate, but a lot can change after the baby is born.  So, this could also determine what kind of surgery they will do.

Post surgery she will be in the NICU for a minimum of 10 days.  Probably up to 14 days, unless complications arise.  He doesn't know how many surgeries she will need.  Some cases need a minimum of 3 surgeries in the first 2 years of the babies life.  We will monitor her as time progresses.

He also wanted to give me a few statistics:
20 years ago the chance of survival was 10%.
Today the chance of survival is 70%-90%.

So, it wasn't the best news today, but at least I know more of what is going on.  I hated the waiting for information, at least now we have an idea of what the plan is going to be.

The best part of my phone call with Dr. Ghazali was when he said to me "I do know that God wont give us anything that we cannot handle."  This is the one thing that I have kept telling myself throughout this whole process.  I immediately burst into tears when he said this.  Hearing the doctor say it kind of threw me for a loop, its not very often that you hear doctors talk about God.  To me, it felt like Heavenly Father was reassuring me that he is here for me and telling me I can do this.  I am still absolutely terrified of what is to come, but was so gently reminded that it is in Gods hands.  Thank you Dr. Ghazali for saying those comforting words, without even realizing how they would touch me.