07/27/2026
Asher's long awaited cardiology appointment was last week. I've been processing the information we discussed, so I waited a bit to share. This post will be lengthy - warning. ;)
There is good news and then not so good news. The good news is that short term Asher does not need a heart surgery. Apparently, Asher's cardiologist and I misunderstood each other, and he said last month that Asher needs a heart cath in 3-6 months - not heart surgery. He said the plan is to get the heart cath at the end of this year or beginning of next year. He also said that his heart function looked a lot better at this appointment. He's assuming the June appointment imaging was a one-off. I pray so.
Now, for the not-so-good news...The Fontan is the 3rd surgery in the 3 step surgery process that most people with single ventricles receive. Has has received a PA Band (akin to the Norwood which is the 1st surgery) and the Glenn (the 2nd surgery). Typically, children receive the Fontan between 3-5 years old, though some children do so later. Our cardiologist said he consistently has children reach age 8 before needing something beyond the Glenn and has had children go as far as age 12. There is another surgery option instead of the Fontan...the Biventricular Repair. This procedure puts the heart back to "normal" flow and functioning, sort of "curing" the single ventricle as it's now a true biventricular heart, though it's not quite that easy. The hypoplastic (small) ventricle has to hold a certain volume and be at a certain functioning level in order to be a candidate for the biventricular repair. There are other things that come into play like pressures and vessel size. We had been holding out hope that we would be a candidate for this surgery but our Houston team is saying we aren't. Okay, Fontan it is. Except at our appointment last week, our cardiologist said that children with Down Syndrome rarely, if ever, receive a Fontan. He said the outcomes post-Fontan are poor. He asked me to think about whether I knew a child with Down Syndrome and a single ventricle who received a Fontan. I thought and thought and couldn't think of a single one. He said that he has never had a patient with Down Syndrome that received a Fontan. He did say that Asher does look to be a good candidate for it but that it would be a team decision and that we should kick the surgery as far down the road as possible...see how long he could make it on the Glenn. My stomach was in knots and my mind was literally rolling. I told him I will find the kids who have DS and had a Fontan and get back to him. He told me not to worry - that everything was fine, that Asher was doing well. Too late. I felt like a bomb was dropped in my lap. So, I started asking other moms and researching myself and true enough the whole world knew that children with Down Syndrome don't receive Fontans, that is the whole world but me. I don't know what rock I have been hiding under. I felt like this whole time the team had been prepping us for a Fontan. So, I asked him what our options are. I asked again about the bivent for the 87 hundredth time, and for the 87 hundredth time, our cardiologist said no. His vessels are too small. I said then, what? Can we get the Fontan and if it doesn't work, can we take it down? He said it could be taken down, but it wasn't that simple. He said once your systems start going down after a Fontan, it's too late. There is nothing you can do. And, you wouldn't be eligible for a heart transplant then because other organ(s) would be effected. So, I asked if we just go straight from the Glenn we are now to a heart transplant, and he said we could but that he didn't need it now and wasn't big enough. He said we need to ride out the Glenn for as long as possible.
So, last week I spent two days reaching out to parents, gathering research articles, and creating a data collection template to make sense of all the information, so we can make the best decision for Asher. All seems familiar. This is what we did when we decided where to bring Asher initially to be born and his surgeries.
Requests from you all: prayers!!!! We need prayers for our Houston team when it comes down to making the procedure decision, prayers that the Lord will perform a miracle and that the bivent would be possible, prayers for clear guidance for us as parents as we decide our next steps - 2nd opinions? analyzing the data? deciding what is best for Asher, prayers for peace through this all including peace specifically in my heart as I feel extremely guilty for thinking about 2nd opinions as we love this team so much but also that I would go to the ends of the this world and back for this boy, prayers that we would find other parents who made similar decisions, and prayers that Asher would remain healthy for as long as possible.
If any of you have any knowledge to share, I'm all ears. :) Thank you so much for loving this boy from near and far but mostly for the prayers!
