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Wednesday, February 14, 2007

We take it for granted

It is one of those organs that we give little thought to. We probably think about it less than our stomachs and intestines--we get constant reminders from those organs when food goes and remains come out. But we probably think about it more than, say, our livers or our pancreas. And probably the main reason we think about it--when we do think about it--is because we hear that we are supposed to exercise to keep it healthy and we are supposed to eat a healthy diet so that its connectors don't get clogged. But other than that, our heart is one of those things that we take for granted. I always did, anyway.

That is until my son was born.

In addition to being Valentine's Day, February 14 is also Congenital Heart Defects Awareness Day. And it was just one year ago that we were just a few weeks from my son's third open-heart surgery. He was born with a complex heart defect--a single ventricle heart with dextrocardia, heterotaxy, TAPVR, and asplenia. In common terms, that means that instead of having four chambers, his heart has only one. It is also on the wrong side of his chest, and many of his organs are in the wrong place. As part of "complex" condition, he was also born without a spleen, which is very important organ for fighting infections (who knew?). There is no fix for his heart. Rather, a series of surgeries have created a way for his blood to move oxygen around his body.

Three open-heart operations, several hospitalizations, and a couple of scares later, we are not done dealing with heart-related issues. Instead, we are nervously awaiting more bad news. We need to figure out why (WHY??!!) there is more fluid under his lungs. This is likely a complication from his last surgery that was never resolved. In the next several weeks, he'll have a cardiac MRI, several blood tests, and probably another heart catheterization to try (once and for all) to identify this fluid's source and to fix the problem.

Really, for kids with heart defects as complicated as my son's there is no fix. There are ways to stabilize him. There are ways to help him life a normal life for a while. But his life, and our lives will never be normal. Our lives are a series of wait-and-sees with ups and downs. For now, we keep our fingers crossed that the tests do not reveal anything significant that send us back to the OR. We wait and hope that all he needs is more time and medication.

What can you do? Father in Chief lists a variety of ways you can help.


  1. I can still remember that June day in 2003 when I first met Riley at West Hillsdale Park when he was 10 weeks old. When you told me about his open heart surgery at 6 days old and you sounded so calm and on top of it all, I still remember being amazed. Here was this totally adorable baby who did not look like he had a thing wrong with him - and his amazing mom. I can still remember your answer to whatever inane question I asked you about how you could possibly be so together. You said, "Well, I've had 10 weeks to get used to it."

    It was so amazing to me then and still is now. Because I know we both know that while it is something you accept as a fact of life now, it must be a constant effort to stay so together, as I've seen you do these past 4 years.

    And although Riley's life may not ever be considered "normal" and by extenstion you will never really feel like yours is either, I'm so happy that he is the wonderful little boy that he is and that he has such wonderful parents.

    I will always be sorry and sad for all of the things that you and your family have to face because of Riley's condition, and I will always wonder, why did this have to happen and what could possibly be its purpose. But mostly I am just grateful that he is here, making the world a better place for being a part of it.

    Lots of love,

  2. Hi, I came to your blog through a Technorati search on people linking to the TCHIN site.

    I just had to say how helpful it is to find the blog of another parent of a child with a complex CHD.

    My son Wren is almost 10 weeks old and has already had two heart procedures to help correct his complex of left heart obstructions. We had a prenatal diagnosis but it is still a long path. It feels like it has been going on forever.

    So much of what you write about your experience with cardiology, diagnosis and doubt resonates with me.

    Thanks for putting this out there and I am sorry there is the ongoing worry about the success of your son's Fontan. We are still hoping we will reach a place where things are stable. For now, its a week at a time.

  3. Oh, Wren's blog is here:

  4. I'm sorry to hear that there are more concerns about Riley. I will continue to pray for your family. I'm glad we got to meet in person at the CHF Christmas party. I feel like so much of what you write is what I feel too. I guess we probably share a lot with other parents of heart kids. And I know there's nothing I can say to ease your mind or make you feel better, except "We're thinking of you."

  5. Hi there,
    I have a 4 year old son who was born with very similar congenital heart defects -- Heterotaxy with asplenia, DORV, CAVSD, TAPVR. He just had his Fontan in August( after 3 other heart surgeries, GI surgery, Dental, Eye, you name it, he probably had it). I can absolutley relate to all your hospital /medical ups and downs. I would love to get in contact with you via email. If you have time I would love to hear from you.