Holden was born on 4/15/16. Two weeks later he had a series of episodes at home that led us to the pediatrician. From there we took an ambulance ride to Ruby Memorial Hospital’s PICU. That night we discovered Holden has Congenital Heart Defects (CHD). We were in shock. As far as we knew, we had brought home a baby free and clear of any abnormalities.
Specifically, he has: a hypoplastic aortic arch, ventricular inversion, double outlet right ventricle with malposition of the great arteries, and subpulmonic VSD. The cardiology team had never seen this combination of defects. Fortunately, they know what types of surgeries to do for each issue.
His first surgery was at just under 1 month old. He had a band put on his pulmonary artery and a jump graph added to his aortic arch.
We lived in the PICU for 20 days. He came home on May 22nd.
His next surgery (either this month or next) will be the Glenn. Later this year (most likely), he will have the Fontan. You can Google both of these surgeries. More or less, Holden is being treated as if he has HLHS, even though that’s not exactly his issue.
**edit to original post: Based on the results of his heart cath, Holden will have a VSD repair for his next surgery. Although we haven’t scheduled the surgery date yet, it will most likely be some time after Holden’s birthday. **
The thing about these surgeries that we haven’t posted about is that they are palliative, which means they won’t cure him of his condition. The best the surgeons can do is create a more comfortable life for him, and buy us time until researchers come up with something better.
The oldest recipients of these surgeries are in their 20’s, so we don’t know what life expectancy looks like.
Of course, all of this is hard to hear for us as parents. No parent wants to know their child’s timeline may be shortened.
Here’s the hope: We believe that God is a God of miracles. We pray and hope for a miracle with Holden. We have seen God’s hand in every step of this journey so far– from Him urging me to go to the doctor immediately, to the choice of NP who took us that day, to an unplanned opening in the surgery schedule for his first surgery, and so many more amazing ways God has been with us.
Holden has been growing so well. He eats with no hinderance, and is meeting his developmental milestones. He’s crawling all over the house, and he’s climbing on everything!
So join us in the continual prayer for Holden’s health. Join us in praying for a miracle so that Holden can live a long and amazing life.