Diagnosis of ASD

We got some unsettling news shortly after moving here and it has been quite a journey trying to figure out what the right answers are. Mason got sick right after our move (again!). He had a high fever for 6 straight days with no other symptoms. Mick had taken him to urgent care twice and they checked vitals, all which came back fine and sent us back on our way. I finally had Mick take him to the ER and demand some tests be done when his fever was still almost 104 on day 6. Oddly enough, it did turn out to just be some crazy virus, because his fever broke the next morning and he was fine, but the chest xray they did to check his lungs showed that the right side of his heart was slightly enlarged. This led to a follow up with a cardiologist which, after quite a few tests, led to the diagnosis of an Atrial Septal Defect.

An Atrial Septal Defect is a hole in the septum (the wall dividing the upper chambers of the heart) As a result, some oxygenated blood from the left atrium flows through the hole in the septum into the right atrium, where it mixes with oxygen-poor blood and increases the total amount of blood that flows toward the lungs. The increased blood flow to the lungs creates creates a swishing sound, known as a heart murmur. The increased blood flow to the right atrium is what caused the enlargement. If left untreated, a number of complications could arise over time. (stroke, damage to lungs, arrythmias, heart failure, etc.. none of which we want to happen)

Our first doctor at Akron Children's made the diagnosis, but didn't want to see Mason back for a year and wanted to wait until he was bigger to correct it, even though he told us there was absolutely no chance Mason's hole would close on it's own. I went home, did some reaseach, and couldn't for the life of me understand why he wanted to wait. From there, I researched hospitals, and found that Nationwide Children's in Columbus has the 5th best pediatric cardiology center in the country and contacted them for a 2nd opinion.

We got our 2nd opinion yesterday and thank goodness we did, because my momma's instinct was right. There is absolutely NO benefit to waiting to do a surgery like this and it is actually better to be done as early in life as possible (He told us the 1st doctor had written in his notes to wait until Mason was 8!!)

Now we are left with a huge decision, though. Do we want to do a trans catheter surgery or open heart? The quick and good sounding answer would be the trans catheter, right?! It's not as painful, he can go home the next day, no opening the chest and stopping the heart... But it's not that easy. Trans Catheter method has only been around 10-15 years, so while it's much less invasive to just go through a vein in his groin rather than cracking the chest open and stopping the heart, not one single doctor can guarantee that my child's heart will still be functioning properly with no issues 20-30 years from now. Not to mention there's also the idea of placing a foriegn object in his heart to close the hole. Surprisingly, he would actually be more restricted post-op with the trans-cath (because the body needs time to heal around and kind of embed into that device to keep it secure)

For these reasons, we are leaning towards open heart. It's so scary to think about them stopping his little heart and to think of how miserable those first couple days will be for him afterwards. I keep reminding myself that they do this on a daily basis. Open heart surgeries are performed everywhere daily and ASD is the most common out of the congenital heart defects. They will open his chest up, sew the hole shut, and then he is good to go... for the rest of his (hopefully very long and fulfilling) life.

I have been researching countless hours until my eyes crossed. Joining groups with moms of children with ASD. Hearing their experiences from beginning to post-op.(both trans cath and open heart) We always hear how resilient kids are and this is no different. Most moms have told me their children had open heart surgery and by the time they came home 4 days later, they were bouncing off the walls and the moms were trying everything to keep them calm. I can't imagine wanting to get up and play 4 days after having my chest cracked open, but kids are crazy little balls of energy! haha You can't keep them down for anything! We still aren't 100% on an answer. We have been praying for God to give us some guidance to make the right decision. I know that no matter which way we go, if anything happens to him, it's on our shoulders that we should have made the other decision. We ask friends and family for advice, but no one wants to give us any, because they don't want to tell us the wrong one either. I don't blame them. I wouldn't wish this decision on anyone. It's certainly not a fun one.

Don't get me wrong. I'm thankful Mason's diagnosis isn't anything more serious. I'm thankful it's a "common" defect that can be fixed. However, it is still my 4 year old's little ticker. and to hear a doctor so nonchalantly talk about death is not comforting "Oh we haven't had anyone die from either procedure in over a decade, so I'm sure he'll be fine" - good to know, Doc, but that's my baby we're talking about here..

I have some questions for the doctor at Nationwide we spoke with yesterday and I have some questions for the guys in the trans cath lab and once we feel we know all the info we need, we'll make our decision. The trans cath people cannot possibly give me the answers I need most, though, because they don't have them. What is his prognosis long-term?? They can't tell me that. They can only tell me it's done well in the 15 years it's been around... I don't think there's anything else they could tell me that can make me feel comfortable with that, but I just want to make sure that when we call the doctor with a decision and go to set an appointment, that I feel confident in the decision we've made and I just can't say that yet.

We've always joked that he was "lazy" because his friends would be running around and after 5 minutes, he'd have to come sit down. Now we know it's because he really couldn't play as hard, because his heart was always pumping extra hard to get it in the right places. and now we know why he was SO darn sick this past winter. He started preschool which exposed him to a lot more and he had a much harder time fighting it off because of his defect. All 4 of us would have the same sickness... the rest of us would be fine after a couple days, he'd still be fighting it after a week. Hopefully this next cold/flu season won't be as brutal on him, because his heart will be functioning normally and his immune system will be stronger. I'm so glad Mick took him to the ER that day and demanded tests. Who knows how long this would have been undiagnosed!

If you are reading this and have a minute to spare, please pray that we make the right decision and pray that my little guy comes out of this with no major issues. His little ticker still has a LOT Of ticking to do, so we need to do what's best for him!