Documents

Holding a copy of Helen Taussig’s book Congenital Malformations of the Heart is almost like holding a copy of scripture. This is where it all began: before publication of this book in 1947, there was almost no understanding of Congenital Heart Defects (CHD). No way to diagnose them. No field of Pediatric Cardiology, barely any heart surgery to speak of. Very few survivors. No groups like The Congenital Heart Information Network (TCHIN), Mended Hearts or the Adult Congenital Heart Association (ACHA). Hardly anything. And certainly no Adventures of a Funky Heart.

I have heard stories of doctors from the late 1940’s and early 1950’s examining their patients with a stethoscope in one hand and Taussig’s book in the other. And finally, instead of telling the worried parents that the situation was hopeless, being able to offer at least a small chance: “They’re making amazing progress with surgical solutions at Johns Hopkins, maybe if we contact them…”

She was years ahead of her time. Taussig wrote an entire chapter concerning a defect she described as “Atresia or marked hypoplasia of the aortic orifice prevents the expulsion of blood from the left ventricle in the normal manner. In such abnormalities the development of the left ventricle is also usually defective.” This defect is almost certainly what we know today as Hypoplastic Left Heart Syndrome (HLHS).

Other records exist that actually predate Congenital Malformations. Alfred Blalock’s surgical notes from the first Congenital Heart Surgery (later known as the Blalock-Taussig Shunt) have been saved and are online. You can read them here. (Page 1 Page 2) And here is a photo of the clamp that Vivien Thomas designed for the surgery.

The first operation occurred on November 29, 1944. Blalock and Taussig wrote a paper about the shunt that was published in the Journal of the American Medical Association on May 19, 1945, that brought the news to the world. (Here’s a drawing from that article). Normally works in medical journals are not noted in the public press, but a medical reporter who was actually a doctor (and not a well informed amateur, as many of them are) read the article. He wrote a short blurb about it that was printed in his paper and picked up by the wire services.

And the people came. At first they went to their local doctors, to find out all they could about this new operation. And then they came to Johns Hopkins Hospital…on the train, in cars, and some of them actually walked, bringing their sick children to the one place that might could help them. Blalock and his team actually performed an estimated 300 heart operations in a single year. The American Weekly printed an article about Taussig, Blalock, and the B-T Shunt in its February 17, 1947 issue and still more people came.

And in late 1947 Congenital Malformations of the Heart was published. The life changing surgery was only designed for Tetralogy of Fallot (ToF) patients, but now there  was a way to figure out exactly what was going on in a defective heart, and with knowledge came a chance.

There is a small section titled “The Plan of the Book” in which Taussig notes how her book is organized. In the second paragraph is this chilling sentence, which was true in 1947: “Although occasionally a patient with one of these malformations may live to adult life, in most instances death occurs before eighteen months of age.*” At the bottom of the page, the footnote reads “*The recent advances in vascular surgery may alter the prognosis in this group of malformations.”

I think Dr Taussig would be thrilled with the results of recent advances in vascular surgery.

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4 Responses to “Documents”

  1. Wendy Says:

    Steve – First, VERY interesting reading (as always). I’ve learned so much from you about CHD. Thank you!

    Second, can I ask your thoughts on something? Something that maybe you have experience with? I find that whenever I have to tell someone that Christopher has CHD’s that they often tell me “oh, don’t worry, he’ll outgrow that, my cousin so and so had that as a baby and outgrew it”. Now I realize that most people seem to think of a heart defect as being an innocent murmur and we know that is not the case with CHD but I find it frustrating and annoying for someone to just dismiss Christopher’s CHD like that and to fluff over all that we’ve been through and whatever lies ahead for him and us.

    What sort of response would you give? Is it even worth responding? I’m still learning those boundaries of who to tell and how much to tell in various circumstances. I try not to overwhelm people, but I do like to educate.

    Your thoughts are valued,
    Thanks
    Wendy

  2. Steve Says:

    I run into that occasionally, too… usually the sentence “But you look so good!” gets into the conversation. Apparently, we’re supposed to look like we’re standing on death’s door all the time (NOT!). Our problem is not that CHDer’s are disabled, its that our problem isn’t always visible.

    Here’s your chance to educate the masses. Agree with the other person, but remind them that all heart defects are different. Even two hearts with the SAME defect can produce a remarkably different set of problems. Two people may have a VSD, but person A is much more affected by it because their VSD is bigger, or located in a different location in the heart wall.

    So once you’ve told them that all heart defects are different, tell them about your son. But don’t use “heart language”. “Heart language” is the little abbreviations and specialized words that the CHD world knows, but not many other people do. If you tell ME that Christopher has CoA with a VSD and an ASD, I know what you are talking about. Most other people won’t.

    Come up with a simple way to describe Christopher’s heart defects, and keep it in short, easy to understand sentences. If they seem to be interested, you keep educating. If their eyes glaze over, cut it short and end the conversation. Try to end it on an upbeat note – “Christopher is a real Cardiac Kid!” or something like that. ALWAYS be upbeat!

    I hope this helps… and thanks for reading!

    Steve

  3. Grand Rounds:Job Advice | Musings of a Distractible Mind Says:

    […] over at Adventures of a Funky Heart, tells of the real impact of Dr.’s Blalock and Taussig.  How real?  Steve is literally living proof of that […]

  4. rlbates Says:

    I think she would be thrilled too! Would love for you to submit this to SurgeXperiences.

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