10 July 2009

Update: Sheridan's Heart

First, I want to thank everyone who sent us comments, well wishes, and information about their experiences. My family appreciates the support.

Second, given the technical nature of some of the following info, the post is a bit lengthy and I tried to provide pics where I could...

So, I'll get to the bottom line first, then the explaining of the various items I discussed with the cardiologist (nothing is ever black and white, right?).

Bottom line: Sheridan's heart is NOT enlarged, and his heart has not changed since the last echo in February. Hurray!

We're not out of the woods with his heart, but I was so relieved to this latest news. I think I squeezed Sheridan a little too tight when I hugged him after hearing the news.

So here is what I learned:

1. The x-ray image was likely taken at the very moment Sheridan exhaled. Remember little ones are put into a contraption that defies all things decent just to keep them in place and as still as possible. One problem: you can't make babies hold their breaths on cue for any amount of predictable time. The outcome: they breath in and out when their brains tell them to and the x-ray tech is simply not privy to that information. Thus, the x-ray tech pushed the button and Sheridan exhaled and - wallah - enlarged heart on the x-ray.

2. The echo revealed the following about his various heart defects:

The PDA and PFO are still small (again, no real change since February). The cardiologist explained he has, on a few occasions, seen a PDA repair itself after a few months and even after about one year. Key words: on a few occasions. Meaning: it's rare, not likely, and realistically it will require surgical intervention. More on that in a minute.

The VSDs...

Again, not much has changed with the VSDs. It is definitely looking like 2 relatively small holes (the February echo was the first image where the doc saw two holes separated with a bit of "heart wall" between them). One is about 1.8mm, the other around 3mm, and they are separated by a part of the wall between the two ventricles that the doc said is likely thinner than a piece of paper.

To help illustrate the rest of the conversation/information, here's the picture the doc drew for me on the exam table's paperliner (you know the long strip of stuff that looks and feels like a toilette seat cover?). Very little of the paper was left unscathed by Sheridan (he loves to pull it, wrinkle it, play peek-a-boo with it). So, I was lucky to get away with this pic (which, of course, he desperately wanted to claw at):


The two areas above that I circled in blue are the VSDs in the wall separating Sheridan's right ventricle (RV) and left ventricle (LV). The arrow shows the direction the blood is flowing through the hole (blood is flowing from his LV to RV, which in a healthy heart wouldn't happen).

The spot I circled below in orange is the paper-thin wall the doc mentioned.


So, it's possible that at birth, Sheridan had two VSDs with this "paper" wall and they just didn't see it, or it's possible that his body is generating tissue to close the one big hole and now we have two holes.

Also, the "windsock tissue" I circled in green below might be tissue that Sheridan is generating to help close the bottom VSD (or the tissue might have been there at birth).


3. The cardiologist's advice: continue our wait-and-see approach. In other words, continue on our current course of careful monitoring (he now sees Sheridan roughly every 3 months), and do no intervention right now. His advice is based on two really important factors:

First, Sheridan is eating and growing well. He is not what docs call "failure to thrive." If his heart was causing him trouble, he wouldn't eat very well and he wouldn't be chubbin' up.

Second, the pressure gradient is what it should be. Sorry, folks, I tried to find a simple definition online to link to that term, but none exist without making you read a medical journal article. So, bottom line, when a hole exists between the two ventricles it causes a certain amount of pressure. If the pressure is too great, it causes big problems for the pulmonary system. Hopefully that explanation helped?

Also, the doc mentioned that if Sheridan had a leak in his aortic valve (circled in red below), he would schedule him for surgery ASAP. But Sheridan has no such leak, thank goodness.


3. The cardiologist said that if we wanted, Sheridan could have heart surgery now. He always says, "You're my boss." He indicated that if the holes were all fixed, some of the respiratory issues might very well go away, but then again, they might not. One thing would be certain, his heart would be fixed and we wouldn't have to deal with any adverse effects (way down the line when Sheridan is older) of keeping them open to wait and see if they'll fix themselves.

He offered to take Sheridan's case to the cardiac surgeons' meeting to see what they say. But, c'mon, let's be honest... they're surgeons. Of course they will say "let's operate." These are all fixable holes with open heart surgery.

The VSDs would require open heart surgery, and the other holes would be fixed at the same time. However, if the VSDs close on their own over time, the other holes can be repaired with a catheter (as minimally invasive as heart surgery will ever get).

4. As good as all this news sounds, the key concern I brought up with the doc is this: I know that, by definition, the presence of these congenital heart defects - and the longer they remain open - means that Sheridan will likely face heart issues when gets older.

So, it's a balancing act. How long do we wait to see if the holes close, knowing that the longer we wait the more likely the holes will have long-term health implications? What is the threshold at which we say, "okay, it's time to close 'em up."

The cardiologist agreed that it is a balancing act, but said that Sheridan's holes are so small right now (and, again, not causing him any problems), that we're safe waiting for now. Close monitoring will help us determine when the balance has shifted in the favor of surgery.

5. The cardiologist noted, given everything I laid out above, that all of his heart defects taken together cannot explain the respiratory issues. In other words, if we were to take the heart issues off the table, Sheridan would likely still have the same respiratory issues. Of course, he ran down a list of reasons why this might be (e.g., people with Ds have shorter airways because the center of their faces are pushed back a bit).

So, all in all, Gary and I talked it over. It was actually a very short conversation because we thought our course of action was clear... we plan to monitor everything carefully and wait and see if our little big man can work on his own do-it-yourself repairs.

Now if we could just get information about his lungs from the pulmonologist... it never ends. :)

5 comments:

  1. oh GOOD! I like this update and I think you and Gary are making a wonderful decision in taking the "watch and see" approach. I know it is scary, but I have faith that everything will work out beautifully!

    hugs!

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  2. Phew!!! So glad to hear this news. Yes, you and Gary are so on top of things that Sheridan is going to be well taken care of. Sweet little guy! Can't wait to see the picture's Jennifer F. took of him!!!!

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  3. Wonderful news. That's twice in the past year I've been scared about an enlarged heart for no reason.

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  4. what a relief that his heart is not enlarged!!! also, sorry you and gary are put in the position of deciding if and when to have surgery to repair sheridan's heart, all the while hoping it repairs itself --- balancing acts are never easy! whatever you decide, it will definitely be what is best for sheridan :)

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  5. I'm relieved that all checked out fairly well. No enlarged heart is fab., news!

    As for the surgeons. This is speaking from experience, two times in fact. They will not want to open Sheridan up unless absolutely necessary. There is far to much risk in open heart surgery. Watching and waiting is hard on us as parents, but the surgeons really do take a look at the big picture, before considering surgery.

    Carly is apt to end up having a third surgery at some point. However, the surgeon wants to wait and see, if and when she needs it. It's possible things will remain at a status quo and that would be great for Carly and mean no more surgery, but things could also go the other way. *sigh*

    We were told by our cardio doc that surprisingly enough, the surgeons are the ones who have to be convinced surgery is a must. Believe me, I thought the same way your thinking about surgeons.

    At any rate, I'm thrilled for you all and will continue to pray for Sheridan.

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