Our goal for this visit was to familiarize ourselves with the surgeons there, do an in-depth echocardiogram, (which is a very high quality ultrasound), and visit the Ronald McDonald House.
The physicians are incredible, and the staff was very good to us. We really feel good about our decision to go to MUSC. However, we ended up getting more bad news when the echocardiogram was broken down for us.
What we were told. His current condition is hypoplastic left heart syndrome, HLHS, which means the left ventricle is underdeveloped, or in Josiah's case nearly non-existent. Over the last few weeks, we learned that through a series of 3 surgeries he is heart would be re-plumbed to work off of 2 chambers. Though still very difficult and complicated, these surgeries are becoming quite successful and compared to a 100% fatality rate for HLHS cases 20 years ago, MUSC has a success rate of 90% or better. This is where we were at before Friday morning.
Friday, the doctors were able to determine that an Atrial Septal Defect is also a problem Josiah will have to battle. ASD in many cases is a hole between the 2 upper chambers of the heart that doesn't close properly after birth. In our case the same condition is referring to the hole closing in utero. Because of this blood is restrained from flowing between the dividing wall between the two upper heart chambers while in the womb. With this, blood flowing through the lungs (which have no oxygen in them yet until birth) is getting backed up. This fluid in the lungs, while already a serious problem with any child, presents some very difficult complications with a child like Josiah with a HLHS heart.
What does this mean? Josiah will need to undergo a catheterization immediately after birth to repair the ASD. Then, he will need to heal and recover from this procedure before the 1st operation for the HLHS repair can be done. Also, before, we were told to try to go as late as we could so that Josiah can grow as large as possible. Now, we need to monitor very closely how much fluid is building up in his lungs. If this reaches a dangerous level, Erin will undergo a C-section immmediatly, and he would be taken out to undergo the cathererization. The HLHS scenario is a 90% -95% success rate. HLHS with ASD is at a 48%-58% success rate. If he were to be premature, the stats get considerably worse.
What do we do? I don't know. We are praying. We are talking to close friends and family. We are "dealing" with things. However, this is like a bad movie we saw on TV once. This doesn't feel like it can really be happening to us. It doesn't feel like reality. As we are beginning to free fall, we find ourselves grasping for Biblical truths that we intellectually know to be true, but are too emotionally numb to feel.
Sometimes God uses other means to speak to us. On Sunday,(tomorrow) I will be leading a new worship song entitled: Amazing God, by Brenton Brown. After learning all of this, the chorus of this song, and it's referral to the heart, has a whole new meaning to me:
You're amazing God, You're amazing God
You can bear the weight of every heavy heart
You can heal the pain, you can clean the stain
You can turn our tears into songs of praise
You're amazing God
Thank you God.
Anonymous I can't imagine what you're going through. Thank you for keeping us updated despite the extreme difficulty of the situation. May the Lord give you wisdom, strength and peace as he guides you through this.