Whole Heartedly

We just got back from Baby Diva’s cardiology appointment. I always feel a little down, even though I am continually amazed and grateful that the operation was developed to heal her heart and we live in a country where such technology is widely available.

She fills me with such joy every single day!

Before Baby Diva’s operation, her condition was always on my mind. Now, I may not think about it until I am changing her top and her scar flashes me a reminder.

Her appointments, however, force me to confront it again. I am reminded that she still has no pulmonary valve and will most likely eventually need one. At this appointment, we had a different member of the team. Her regularly cardiologist is just an incredibly optimistic man. While I appreciate his skill and his amazing bedside manner, I sometimes feel blindsided when I encounter the “realists.” The ones that feel compelled to mention that “there’s always a risk, even if it is 1%.”

At this appointment, we learned that she has a small hole in her heart–left intentionally and one that is present in 5% of “normal” heart healthy adults. We also got good news–there has been no further narrowing in her arteries and all signs point to a favorable outcome.

However, I also learned that the “indicators” they use do not correspond as well as they would like to the outcomes they are trying to predict. What this essentially means is that even kids who are “looking good” can experience problems the medical field is not yet able to explain.

Also on my mind is the thousands of kids the world over who do not have access to top surgeons, or even clean, well-stocked hospitals or regular check-ups.

Baby Diva’s defect, Tetralogy of Fallot, is a certain killer if left untreated…only a handful will make it beyond age 2, with most dying in the first year of life. but the surgery has a 95% success rate and most total repairs give their recipients a chance at a long, normal life.

One operation is often all it takes to bring a baby’s chance from near zero to near one hundred percent. Amazing.

Baby Diva’s regular cardiologist has his own charity and works with a number of non-profits, as well as the US military, to identify candidates for surgery in other countries and bring them back to the US for operations. Thank the Lord for people like him!

More research is needed, though, both for Tetralogy of Fallot and other congenital heart defects and the techniques and medicine that can bring hope to families.

More research so we better understand the causes of these defects, know the optimal age for repair, and so repairs can be less intrusive, safer, and more effective.

*sigh*

I just had to get that all out.

Last night I made a Squidoo lens about Congenital Heart Defects, and I will add any money made from the lens to my yearly donation to the American Heart Association. When we get settled I plan on looking into how else I can help raise money for heart-related research.

I was also thinking in the car ride home that I would like to start a blogroll for anyone who writes (even if it is just a small part of your blog) about a their own or a loved one’s heart defect. Blogs were so helpful for me when we were getting ready for Baby Diva’s operation.

If anyone out there who is interested sees this, let me know if you are interested. Just e-mail me your link (mamaluxe at gmail dot com) or leave your e-mail and link in the comments and I will get back to you.

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6 comments

  1. I’m so sorry to hear about your daughter’s heart condition. I would have a hard time dealing with that…always worrying. But you are right, we are lucky to live in a country where we have access to the experts that can help.

  2. melody says:

    Hugs to you and baby. What a difficult path this is, but one I’m sure you’re up for and will handle beautifully. Prayers are being said for your dear little one.

    Your comment about lifting her shirt and being reminded by the scars…I live that with one of my sons. Sometimes I (almost) forget, but then I see the scars which cover his body from various surgeries and realize, hey, we lived through that, and that and…I just thank God he’s a happy little boy.

    Take care and thanks for visiting my blog. I’ll be back.

  3. 4mymemories2 says:

    Yes, we are very fortunate to live in an age and a society where we can get much needed, serious medical treatments. I am glad to hear that for now, she is doing great. That small percentage of what could go wrong will hang in the back of your mind for a long time. Try to not focus on it, but instead focus on the larger percentage of good outcomes. Kudos to the Doctor and his charity, we need more people like him!

  4. Chaotic Mom says:

    Hey, my gal pal doesn’t have a blog, but she found out right before her hubby’s deployment that their 14 year old son had a hole in his heart. Turned out to be many holes, actually. He finally had open heart surgery, dad came home on emergency leave, and the son is doing much better now.

    I have three boys, two deaf with cochlear implants. I feel very blessed by the medical care we’ve received, even as a military family. Constantly on the move (right?). But I still worry, constantly. Sigh…

    I’m praying for you guys, too! 😉

  5. Mama Luxe says:

    Thank you for all of your comments! It is so wonderful to hear from people, both those who offer support and those who have similar experiences to share.

    One of the things that kept me going while I was waiting for her surgery was to read blogs and bulletin board posts from people who had tet babies (or, in some cases, were tet babies).

    Thanks!

  6. momomax says:

    I’m thinking of you and that gorgeous baby.

    xoxo

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