Fetal Intervention and Boston Children's Hospital

We posted twice today so make sure you read the post about the Jan 16th echocardiogram first before reading this one!  So this post will bring us all up to present day so you all will have the current status of where we are on this journey.  Sorry so long to get people caught up but there was a bucket load of information to relay since starting this blog.  Back to it...

Beth and I waited 6 days to hear back from Boston and finally received word on Wednesday of this week that we are indeed candidates and that a fetal intervention procedure would benefit our son.  We spoke with Dr. Kevin Friedman from Boston and he explained the procedure, some of the logistics, and potential risks and outcomes.  Here's quick breakdown of what he said.   Now this is an oversimplification but basically they take a long needle and will go in through Beth's abdomen, into the womb, into Shawn's heart, and poke through the atrial septum.  They will blow up a tiny balloon inside the right atrium and pull it through the atrial septum hopefully leaving a sufficient hole.  They will go back in and implant a stent to keep the hole open during the remainder of his development.  The hopes of this procedure if successful is that it will allow immediate flow and blood communication between the two upper champers.  This will effectively relieve any current pressure in his cardiovascular system and prevent any future such development.  We will hopefully catch it early enough to allow any damage already done time to correct itself in the safe environment of the womb.  This procedure also has the potential to eliminate the need for Shawn to undergo emergent intervention right after birth.  He'll be able to recover from the strains of birth and get nice and strong for the Stage I surgery.  

Now I want to make something clear.  This is not a fix all.  This does not place us back in the 80% survival rate of the typical HLHSer.  As with anytime you invade the environment of the womb you have a chance to lose the baby.  In this case we have a 10% chance of this to occur.  Also only 75-80% of these procedures are deemed successful and an adequate hole was created.  A lesser number yet that a stent is able to be properly implanted.  Overall survivability for this condition in where a fetal intervention was performed is slightly above 50% which is a significant bump from 10-20% if the atrial septum was left alone and dealt with after birth. 

As with many parents dealt these cards, when the time comes, we want to be able to throw the best possible hand down on the table. Beth and I feel and Dr. Farrell agrees that this procedure will give our little guy the best chance at survival and it looks as though we'll be heading to Boston!  We don't have anything final yet but the Boston doctors want this to happen within the next 2 to 3 weeks.  We'll keep everyone posted when we find out more.