Trigger warning .. if words like mortality rates and information regarding insurance diagnosis codes or hospital outcome data scare you, I would tread carefully through my post. It is all mostly good news for us though.
One thing I can tell you for sure, being pregnant with a baby that has a critical congenital heart defect, you get to experience ALL the emotions. We were initially told it was “probably nothing, but they needed to check to be sure” and then we were told there was definitely something “not right” so we were sent to a maternal fetal medicine specialist to take a better look. You can read a bit more about all of that here.
From there, Huck was diagnosed with hypoplastic left heart syndrome or HLHS. And then the endless researching commenced. We read things about how 20-30 years ago, this was considered fatal. And that even now, there are still babies that die from it. Some die from not knowing they have a defect so we were so thankful that we knew about Huck’s so early, but some babies die much later from surgical complications or illness that affects them too greatly. The fact that data exists for each hospital on the mortality rates for the first surgery, the Norwood, was scary. Would our baby be one of those numbers? It was terrifying territory not really knowing the life ahead for our baby.
As mentioned in the first update, we had an appointment with the pediatric cardiologist and he confirmed HLHS and we talked a bit about the plan. Some of you know I lost my job last year when the oil field market plummeted and I was the one that carried insurance on our family. We were forced to obtain insurance through the marketplace just so that our family didn’t go without insurance. We pay a lot of money for very little coverage. Without going on a very emotional political rant and to maybe make a long story a tiny bit shorter, we started finding out that we had some pretty intense insurance network issues. We were sent to a specific maternal fetal medicine and pediatric cardiologist because they were in network but the recommendation from the pediatric cardiologist for standard HLHS care would be at least 3 open heart surgeries, starting the week Huck was born. He said that we would deliver at the hospital he was associated with, UTMB in Galveston, and then Huck would be transferred to Memorial Hermann Children’s in Houston which is affiliated with the UT medical system. UTMB and UT are contracted with each other. I made phone call after phone call ensuring that this was the best option for us and to make sure of who we were/weren’t in network with. I was told we were in network with both UTMB and Memorial Hermann. So we proceeded down that path.
Now, as a heart mom, you start to learn a lot about hospital rankings and why they are ranked the way that they are. You also see the scariest things like the hospital outcome data that I mentioned. Texas is so blessed to have the #2 ranked hospital in the United States for pediatric cardiology and heart defects, Texas Children’s. It was assumed by pretty much everyone (including us) in the beginning that with such a serious defect, we would be going to Texas Children’s… until we found out we were not in network with them. Again, I made phone call after phone call and even got some help from some family friends that are on the board of directors but it was determined that if we were in network with another children’s hospital that could perform the surgeries, hospital ranking didn’t matter to insurance. We had to go where we were in network, just to simply be able to come out of this not millions in debt. (Yes, millions. Literally.)
We ended up researching our specific surgeon and found that his credentials were excellent (he came from the #6 ranked hospital in the US for pediatric cardiology) and we loved our current pediatric cardiologist we’d been seeing. We decided it would all be okay, we were placed on this path for a reason, and we felt confident that they would take the best care possible of Huck. We also decided that we didn’t want to do a transport at all so we were going to go ahead and deliver at Memorial Hermann, so that Huck would be where he needed to be.
And then another bombshell happened. We found out that there was some kind of misunderstanding during all of those calls and were NOT in network with Memorial Hermann either. Come to find out, the insurance plans offered in the marketplace exclude coverage for care at tertiary facilities… like children’s hospitals. We were not in network with a single children’s hospital. Not a single one. I was not prepared for the emotions of having our baby be diagnosed with a critical heart defect but I was damn sure not prepared for the road blocks we were facing. I had no idea what to do from there. I cried ugly ugly tears that day.
So I started making phone calls again. Phone call after phone call. I was getting pretty good at making phone calls. I made 43 in a single day one day. I finally figured out that in order for Huck to have his necessary care, we would have to request out of network coverage for a tertiary care facility. At this point, we realized if we were about to go down this path, we might as well go for Texas Children’s. So I reached out to all of my previous contacts and got more information and tried to help my doctors office coordinate with my insurance company to get the referral done correctly. Everything seemed to be moving in the right direction. Then we found out that our current pediatric cardiologist had not officially made his recommendation for care. He normally does that after the follow up echo, which we were scheduled for the week following all of the insurance chaos. So it was decided that we would see him for our follow up and get his official recommendation for care in order for the insurance referral to be finalized.
On March 30, we went to our follow up echo, hoping for at least no change. We were praying that they didn’t see any additional defects or any less function in his heart. We were met with good news! They were able to see a bit more on Huck’s left side than they originally thought. Originally they could not see a significant left ventricle, and could not see the aorta (the main artery that comes out of the left ventricle). This time, they could see both main arteries but they looked to be feeding from a single ventricle. It was explained to us that his potential diagnosis could change. (Side note, all diagnoses given during pregnancy are considered potential because he won’t be officially officially diagnosed until birth and they can get a good echo on him.) He said that instead of hypoplastic left heart syndrome, we could be looking at a variation of double outlet single ventricle, and that he was leaning towards saying it was the right ventricle, (DORV) but wasn’t quite sure. (Remember this part – the fact that he couldn’t commit to saying which ventricle other than it looked to be a single ventricle with a tiny second ventricle was a bit of foreshadowing on what came later.) He said this doesn’t mean anything major except that the urgency of Huck’s first surgery may change. HLHS babies absolutely need surgery within the first week to be able to live, but DORV babies can sometimes wait a few weeks and in less extreme cases, a few months. That would all have to be determined for sure after he is born. But we left that appointment with two things accomplished – we were so glad for even the slightest improvement in potential diagnosis and we also got his recommendation for birth and surgeries to be performed at a tertiary hospital. We got the phone call from my OB’s office that afternoon that the recommendation had been submitted to insurance and that finalized the first referral. And then we waited.
To be continued…