Appointment with the Pediatric Cardiovascular Surgeon

We were scheduled to meet with the surgeon at 12:15 and then tour the NICU afterwards but that was changed because the surgeons were in surgery longer than expected so we didn't meet until about 3:15.  We will need to get used to that because there were multiple other families there in the same situation so we all just came back when the surgeon could be in the office.  I would rather the surgeons take their time on surgeon for a child that needs it than rushing over to our appointments anyways.  

So we toured the NICU/ PICU first (which I talked about in a recent post) and then we came back to meet with the surgeon Dr. Austin.  We had already met with the Pediatric Cardiologist twice so we had a good understanding of what to expect during surgery.  The Cardiologist had previously drawn pictures for us so we discussed the pictures with the surgeon.  He discussed the three upcoming surgeries and what to expect for our baby.  So here are some of the main points (some new and some we were previously told):  

*They want the first surgery is called the Norwood and they want it to happen ideally between 5-7 days after birth (but no later than 10).  

*The second surgery is called the Glenn (between 4-6 months old)

*The third surgery is called the Fontan (between 2-3 years old)

*There are two surgeons who will work on here:  Dr. Erle H. Austin, III and Dr. Christopher Mascio- they are both great surgeons.  If she is born on an odd numbered day then Dr. Austin will be here main surgeon and an even numbered day means that Dr. Mascio will be her main surgeon.  
* They do about 10-15 of these surgeries per year (hypoplastic surgeries)
* Survival rate is 80-90% for best case scenario:  we were previously told 50% then 70% and now as high as 80-90% (that information came from multiple different doctors),  the best case scenario means: the baby is full term, heart is strong with no additional defects found, no other physical or developmental concerns with the baby, and no chromosome issues
* So I don't know what her real survival rate is because of the chromosome 17 concern but I will take higher survival rates :) 
* This is the only time we will have a meeting like this before I go into labor or have her.  After she is born the pediatric cardiologist will come shortly after birth to do a fetal echo-cardiogram on her to really check out her heart.  They do the best they can to see her heart while she is inside of me but they can't get an absolute clear picture (not like they can when they can hold the doppler directly on her body).  This clear picture will give them everything they need and if not then a cardiac cath will need to be done but they think the doppler will be enough.  
* We were told that no matter what you call it (hypoplastic left heart syndrome or something else), it all has the same outcome which is the 3 open heart surgeries mentioned above.  So we will see what the doppler finds after she is here.  
* Surgeon says a rule of thumb is "bigger the babies are, the better they do" (for surgery, survival, etc) and we heard this phrase a few times from different people during the multiple appointments we had.  The surgeon prefers that she is at least 6 pounds or higher for the three surgeries and if she was 4 pounds then they would not do the Norwood but rather a hybrid procedure (which is not as successful as the 3 separate procedures).  He said low birth weight is just a big risk factor. 
* Feeding issues are not uncommon for hypoplastic babies (and maybe heart babies in general?) and about 50% of them require a g-tube through their stomach for feeding. 


We also learned the following:  The first time that all 3 procedures (Norwood, Glenn, and Fontan) were performed in the stages that they do now was completed on a child for the first time in 1985.  He told us that so we know that the oldest survivor is about 25-27 years old so the future beyond that is not exactly clear for these children.  He said that it would be fair to say that life expectancy for these children are not average and really their life expectancy is unknown.  Some of these individuals do well and others not so well.  Some need heart transplants and some haven't needed them (yet).  He said that one thing we should know is that our baby will never have a normal heart and she will only have one pumping chamber so as she gets older she can have complications.  He said that these children can live a normal life (yes possibly he said), maybe take 1-2 pills (at least) per day for their entire life, won't be a competing star athlete, and yes our baby may get tired but her body will tell her when she needs to rest (or take it easy) so we won't really have to worry about telling her to slow down (because she will do that on her own- her body will make her).


Dr. Austin was VERY nice, helpful, and answered our questions.  He never acted like our questions were stupid and that made me feel better.  They have great reputations and I was glad that not only are their good surgeons and good to their patients but they are nice to the parents too.  :)  


So this appointment took place the same day as the NICU/ PICU tour so it was a very informative yet information overload day.  I still need to write about our Neonatologist meeting plus the sibling class.  Thanks for reading!  :)