Posts Tagged ‘Pediatric Cardiologist’

Awareness vs. Assistance

February 11, 2010

Every week is CHD Awareness Week for me. – Fellow Survivor on Twitter

Awareness of Congenital Heart Defects is the focus of the week, but what happens next? Hopefully we can convince mothers to be to give up any bad habit they may have and take better care of themselves, but too often there is no way to predict a Congenital Heart Defect (CHD). Most people feel genetics and environment combine to cause CHDs, but no one knows what the proper mixture is or what triggers them. It is so random that there is really no template – just a number. On average, 1 in 125 children are born with a heart defect.

And that’s when awareness isn’t what’s needed. We already know what a CHD is because the doctor just told us our unborn child has one, now the question in our minds is Oh God, what happens now?

That’s where groups like Broken Hearts of the Big Bend come in. They are the classic support group – folks who have been there before. They’ll be right there, holding your hand. Watching the clock with you during surgery. Another parent will be able to sit down with you and tell you what to expect, because someone in their family has the same type of problem with their heart. They know what it feels like to Walk the Hard Path, because they’ve all gone down that road themselves.

And they hold events like the Regional Forum, too;  so that their members can gather and talk to heart doctors over the course of a day, and not in the rushed environment of the doctor’s appointment. And they ask people like me to speak, because I’ve been there, too – but as a patient. I see things from a little bit different angle, and perhaps I can allow you to stand in my shoes for just a little while.

A support group is not a guarantee – no one can say “Do this, this, this, and the other thing and everything will be fine.” But they can help tip the odds in your favor. And you’ll have an advantage over my generation: we all thought that we were THE ONLY ONE. No support groups, no internet, and no clue that the CHD survivor family was slowly growing, because each one of us was in our own personal little hell. There is no one else like us – what did we do, God?

I hope you have made plans to attend. Because you aren’t alone. I plan to be liveblogging, so even if you don’t live in the Big Bend, just keep checking Adventures of a Funky Heart! on Saturday.

I don’t mind a bit if you look over my shoulder.

Introducing Helen Taussig, M.D.

September 16, 2009

If you’ve checked out the ABOUT THE AUTHOR page in the blogroll, you’ll see that I construct my own action figures. I’m not that skilled – don’t imagine me actually pouring a mold, letting it cool, and then assembling the parts into a body. What I do is take an existing figure and through the use of new clothes and small alterations, I make that figure into a new action figure.

Here’s an 11 inch tall figure of Dr. Helen Taussig that I created for an Adult Congenital Heart Association silent auction in 2008. I invested about $40 in the base figure, clothes, and accessories; she sold for $100! I’d love to make another one, but I haven’t been able to find that base figure since. I think it has been discontinued. It may be for the best – there was only one Helen Taussig!

Question: I usually try to be as accurate as possible, but I intentionally created an error on the Taussig figure. Can you spot it? (Answer below the photographs)

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Answer: The Taussig doll has her hearing aid in the wrong ear. The figure’s hairstyle naturally exposes her left ear, which would make the hearing aid placement more visable. The real Dr. Taussig wore her hearing aid in her right ear.

The List

September 14, 2009

Here’s a needed resource for parents of Cardiac Kids: a 36 page booklet listing Pediatric Cardiologists, Congenital Heart Surgeons, and hospitals that provide Open Heart Surgery for children. The listings cover both the United States and Canada and most of the information was updated in October of 2008. (Some was updated later than that)

It’s a downloadable .pdf file published by Congenital Cardiology Today.

Disciplining your Cardiac Kid

April 15, 2009

You may have the impression that when I was growing up, life around the Funky Heart household was all roses. I’m afraid not – I was a kid, and like all kids, I got into trouble!

I don’t remember exactly what I had done, but since it was a Sunday night, I had probably misbehaved at church. (Ten year old boys are very good at that!) And when we got home, I was spanked for my misdeeds. The next day at school, I had a coughing spell and threw up blood… and within a month, I underwent my second heart operation.

Were the two events related? As far as I know, they weren’t. I’ve written before that the doctors at Johns Hopkins had predicted that my first operation would last ten to twelve years before I outgrew it and something else would have to be done. Since I was ten years and six months old at the time of the second surgery, they were pretty accurate. But I also know that was the last spanking I ever had.

Maybe my parents were a little scared to spank after that. I never got into too much trouble; Heart Moms can tell you, their Cardiac Kids usually aren’t hellraisers. (Though every now and again you meet a Cardiac Kid who is spoiled rotten. I have to resist the urge to tell those children to straighten up, you’re giving the rest of us a bad name!)

Disciplining your Cardiac Kid is an issue that you will have to face – they are children, after all. Nobody gave them a list of the rules of proper behavior when they were born, and even if they did, the child can’t read them. And other than telling you that the “average” spanking probably won’t hurt them, I can’t tell you what to do. You will have to speak to your child’s cardiologist about it.

Don’t be ashamed or embarrassed; Pediatricians and Pediatric Cardiologists have been here before. They aren’t going to give you a hard time or call Social Services, unless your idea of discipline is pretty extreme. Just ask, and follow his/her advice.

Dad may have rethought his ideas on physical discipline, but he replaced it with this glare that lets you know he is not pleased with your actions. I have seen that glare…trust me, it’s not pleasant!

Getting there

April 2, 2009

Every six months or so I feel the need to mention this information again: Perhaps there are readers of Funky Heart who are new to the Congenital Heart Defect world and they don’t have their bearings yet. All of this came crashing down on them like a ton of bricks. In a few short weeks they’ve learned an entirely new language, met doctors they didn’t expect to meet, and learned what the phrase right now truly means. And you wonder if this madness will ever end.

The short answer is no. Your child will need specialized medical care all of his life. But we’re getting better at it. Today, 90% of all children who have open heart surgery survive to become adults. 75% of all children with Hypoplastic Left Heart Syndrome (HLHS) survive the three surgery procedure needed to live. That’s too low to be acceptable, but in 1980 there was no surgical option at all and the survival rate was close to 0% – a lucky few were able to get a heart transplant.

To educate yourself about your child’s heart defect, go to THIS LINK; it is excellent. The American Heart Association has some good information, and THIS ONE is probably the best.

If your Cardiac Kid is in his/her teens, it’s time to be thinking about moving them to Adult Cardiac Care. You can’t just pick an adult cardiologist out of a phone book, they aren’t trained to deal with patients who have CHD’s. You need someone who is trained to deal with Congenital Heart Defects but can see it from an adult perspective.  There aren’t that many of them (yet), so you need to go here and read the patient summary of the BETHESDA 32 REPORT. At the bottom of the page is a link to download the entire report as a .pdf file, you need to download it, print it (have plenty of paper for your printer; it is long) and read it carefully. It will give you an outline about how to move your child from a Pediatric Cardiologist to Adult Care. Also of interest is THIS REPORT (in .pdf format) from the National Heart, Lung, and Blood Institute (NHBLI). It’s only 9 pages long; print it and read it.

The ultimate goal is to enable Congenital Heart Defect survivors to live longer, better, and more fulfilling lives. Like the adults in this video produced by the Adult Congenital Heart Association (ACHA):