Posts Tagged ‘Norwood’

You’ve come a long way, baby

August 17, 2010

Jill and Shane continue to report on Joshua. Diagnosed prenatally with Hypoplastic Left Heart Syndrome (HLHS), Joshua was delivered at a major medical center and was immediately sent to a Neonatal Intensive Care Unit. By contrast, I was born in a community hospital of less than 100 beds. My grandfather – only an occasional smoker – was so nervous that when I didn’t show up on time, he unwrapped the celebratory box of cigars that he planned to give away and lit up. He was chased outside (smoking was accepted almost everywhere in the mid 1960’s, but a nurse wasn’t comfortable with anyone smoking around the newborns) so he stood under a dogwood tree and smoked until he just had to find out how things were going. Then he jammed his cigar into a fork of the tree and rushed back inside. He never said anything about retrieving his cigar, so for all I know, it could still be there.

Joshua’s parents knew they would be on a roller coaster ride from the moment he arrived. I looked normal. There were no prenatal tests in the 60’s, not even a way to tell if the unborn child was a boy or a girl. Only my mother’s intuition led her to notice that something wasn’t exactly right, and she consulted a pediatrician. The pediatrician that they had used for my older brother was out of town so they talked to the New Guy.

The New Guy realized he was looking at a heart problem but wasn’t sure of the details, so he sent my parents and me to the BIG HOSPITAL 200 miles away. The Doctors at the BIG HOSPITAL figured out that I had Tricuspid Atresia… and stopped. They had never successfully treated a Tricuspid before, so they gave my folks the diagnosis and told them to take me home and enjoy the time I had. I was not long for this world.

New Guy hit the roof. BIG HOSPITAL may not be able to do anything, but he knew of places that would at least try. He found one, and to make a long story short, I was a patient of New Guy until I was 20 years old. The “new” had worn off by then, but he’s one of only two doctors to really understand what is going on inside of me – him and my current Cardiologist. I still see him around town every so often!

By contrast, Joshua was pegged as a Cardiac Kid long ago, while he was still being knit together in his mother’s womb. The moment he was born he was handed off to a skilled care unit. Their only job is to keep him stable until it is time for his repair. And while we thought 200 miles was quite a way to travel to a hospital, that’s no longer true. 200 miles is a short trip.

We’ve literally come a long way.

Better Surgery!

June 1, 2009

Here’s an interesting report from the March 2006 issue of Heart: A look at the outcomes of surgical correction for Hypoplastic Left Heart Syndrome, or HLHS. What makes this report so unusual is that it covers twelve years at the same hospital: While surgeons, doctors, and nurses come and go, the hospital policies and standards of care stay in place and hopefully improve. So this can be considered an unbiased study. When results from more than one facility is used, the results can be affected by a hospital that has more (or less) successful results than average.

Beginning in 1992, 333 patients underwent the Stage I surgical correction for HLHS, also known as the Norwood procedure. 203 patients underwent the Stage II operation (the Bidirectional Glenn), and 81 had the Fontan Procedure (Stage III). While HLHS is difficult to overcome, the report does not elaborate on the difference in numbers. It is quite possible that patients had their Stage II or Stage III operations at different facilities.

Over the course of the study, mortality after the Stage I operation dropped from 46% during the first year (1992) to just 16% in the last year (2004). The survival rate jumped dramatically in 2002, when the Stage I was altered: the Modified Blalock-Taussig Shunt that was part of the operation was replaced by a Right Ventricle to Pulmonary Artery Conduit.

Medical research is a long, tedious assignment – there are very few “bolt of lightning” moments and it often requires gathering massive amounts of data. But it works, and is often the only way to learn if a new theory is both effective and safe.

Advanced Cardiology: Knowing the Enemy

December 15, 2008

So after yesterday’s review, we have a good idea how a healthy heart works. But you or your child has a heart defect… what do we do? There are thirty five different, distinct Heart Defects. And if that isn’t bad enough, some of us have a “blend” – a defect that has traits or two (or more!) single defects.

That’s why I’m going to recommend a book to you. Before I do, I’ll state this: I don’t work for this company, nor do I have any type of commission deal with them. What I do have is a copy of their book, and I use it a LOT.

The name of this book is the Illustrated Field Guide to Congenital Heart Disease and Repair.

There are two versions. Both have a spiral binding, so it can lie flat on a desk. The large format version is 7 inches by 10.5 inches, about the side of a larger paperback book. The pocket sized version is 4 inches by 7.5 inches, small enough to slip into a purse or even tuck into your pants at the small of your back comfortably. Even in the smaller size, the print is very readable.

The book features an explanation and a diagram of all the identified heart defects. If that isn’t enough, most of the recognized Congenital Heart Operations are described and diagrammed, along with the major variations. For example, you can find descriptions of the Blalock-Taussig Shunt, the Mustard repair (which is rarely used today), two versions of the Fontan, and five different ways to complete the Norwoord Procedure.

And if that isn’t enough, there is also a section concerning Cardiac ICU units, Electrophysiology, and information on some of the drugs that are available for Congenital Heart patients. This is probably the most useful book I have ever seen. I have the Second Edition, but I recently ordered the Revised 2nd Edition, which has been expanded to over 400 pages! The only thing that I don’t like about the book is that it has a few more “doctor words” than a newcomer to CHD’s may understand. Usually if you don’t understand the words, the diagrams will show you.

You can buy one using this form. Don’t let the form scare you – this company sells the majority of its items to doctors offices and hospitals, that’s why you see the words “Purchase Order” and fairly high prices. The Field Guides cost $50 for the smaller version and $125 for the larger edition, and they can be worth every penny.

No one can make a heart defect any less scary, but this book can make it easier to understand. And as a 1980’s public service announcement stated, “Knowing is half the battle.”

Red and Blue Pride!

November 24, 2008

Alfred Blalock (Alan Rickman) and Helen Taussig (Mary Stuart Masterson) in HBO's Something the Lord Made

Alfred Blalock (Alan Rickman) and Helen Taussig (Mary Stuart Masterson)

Still from HBO’s Something the Lord Made

Saturday (November 29) is the 64th anniversary of the Blalock-Taussig Shunt. It’s our birthday, and I think we should celebrate.

All of you are not invited over to my house – I don’t think I have a big enough cake – so you’re going to have to party by yourselves. “But wait a moment,” you may say, “my operation wasn’t a Blalock-Taussig. It was a Waterston Shunt, or a Bidirectional Glenn, or the Norwood.”

Doesn’t matter.

Because the Blalock-Taussig operation was the first surgery designed to relieve the effects of a Congenital Heart Defect. Without Dr. Blalock and Dr. Taussig, there is no heart surgery. And without heart surgery… we aren’t here. So it doesn’t matter if you’ve never had the Blalock-Taussig Shunt; if you have a Congenital Heart Defect and have survived an operation, this is your event, too.

To celebrate, I’m wearing Red and Blue on Saturday. I was blue (Cyanotic) and now I’m red… or at least, an acceptable shade of pink. Why don’t you do the same? Ask your friends to wear the colors, also.

I’m also wearing my Adult Congenital Heart Association (ACHA) pin. If you are a member of a CHD support group, make sure you put yours on, too. I’ll lose my ACHA lapel pin in a moment, so I usually leave it attached to my suit jacket; but I’m wearing it Saturday. Wear yours. If you have an extra pin, give it to someone you care about, or who cares about you.

Call every Heart Dad and Heart Mom you know, along with fellow Heart Warriors and get them involved. Let them know what you are doing and why – and tell them to pass the word. 1 in 125 people have a heart defect, let the world know how many of us that there really are!

A Congenital Heart Defect is an “unseen disability” – the general public will never know what we put up with. Instead of whining and complaining, we just want to do the best we can and be happy and productive citizens. We usually don’t draw attention to ourselves… but on Saturday, we need to brag a little!