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Disclaimer

The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.

The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.

By ACHA on 7/15/2014 2:41 PM

By Michael Pernick

This blog series features stories involving congenital heart disease and the law. The blog posts may discuss contemporary or historical court decisions, laws or regulations, or other legal issues that relate to CHD. These posts are purely for entertainment and educational purposes and are not legal advice. Any opinions expressed in this series of posts are solely those of the author and do not represent the Adult Congenital Heart Association.

Sheldon Monroe is a Korean War veteran. He entered the service in September 1951, thinking he was entirely healthy. He had been a member of his college basketball and football teams. He was shocked when, shortly after basic training, a physical examination revealed a severe heart murmur. He was soon diagnosed with a ventricular septal defect. He served for two years and was honorably discharged in 1953.

By ACHA on 5/12/2014 1:23 PM

By Michael Pernick

This blog series features stories involving congenital heart disease and the law. The blog posts may discuss contemporary or historical court decisions, laws or regulations, or other legal issues that relate to CHD. These posts are purely for entertainment and educational purposes and are not legal advice. Any opinions expressed in this series of posts are solely those of the author and do not represent the Adult Congenital Heart Association.

Jessica Rice was born in March of 1987, and her story began the same way as it does for many in the CHD community, including me: Soon after birth, she started turning blue. The doctors did an echocardiogram and based on their initial testing they diagnosed Jessica with pulmonary hypertension, but did not discover her congenital heart defect.

By ACHA on 3/6/2014 1:07 PM

By Michael Pernick

Last week, I joined advocates from across the country in Washington, D.C., to meet with our elected leaders and their staffs and urge them to support Americans living with congenital heart disease (CHD). What we were asking for wasn’t unreasonable: We want the government to fully fund a Centers for Disease Control and Prevention (CDC) surveillance program. Millions of Americans are living with CHD; in fact, it is the most common birth defect. Nevertheless, the vast majority of adults with CHD – more than 90% – aren’t getting the care they need. In fact, we don’t even know who most of those people are, and we don’t have data on what happens to adults as they age out of the pediatric system.

By ACHA on 1/27/2014 11:35 AM

By Michael Pernick

This blog series features stories involving congenital heart disease and the law. The blog posts may discuss contemporary or historical court decisions, laws or regulations, or other legal issues that relate to CHD. These posts are purely for entertainment and educational purposes and are not legal advice. Any opinions expressed in this series of posts are solely those of the author and do not represent the Adult Congenital Heart Association.

I’m writing today about one of the first times Congress discussed the importance of providing support to individuals with congenital heart disease. But before I get into that, some background…

By ACHA on 12/31/2013 9:32 AM

By Michael Pernick

This blog series features stories involving congenital heart disease and the law. The blog posts may discuss contemporary or historical court decisions, laws or regulations, or other legal issues that relate to CHD. These posts are purely for entertainment and educational purposes and are not legal advice. Any opinions expressed in this series of posts are solely those of the author and do not represent the Adult Congenital Heart Association.

On a Saturday in September 1921, Frank Wloszczynski was driving in Milwaukee and running late. He was not paying attention to the road, and pushing his car (presumably a Model T) as fast as it could possibly go. He did not notice that Anton Gerber, a child, was crossing the road. Wloszczynski hit little Anton. Although he survived, Anton was hurt.

By ACHA on 10/17/2013 10:43 AM

By Michael Pernick

This blog series will feature a story involving congenital heart disease and the law. The blog posts may discuss contemporary or historical court decisions, laws or regulations, or other legal issues that relate to CHD. These posts are purely for entertainment and educational purposes and are not legal advice. Any opinions expressed in this series of posts are solely those of the author and do not represent the Adult Congenital Heart Association. The exact dates and names of the parties involved in this matter have been altered. This is the second part in a two-part series about medical malpractice; the first part can be read here.

About three years ago I developed a serious fever that did not go away with over-the-counter medicine. After two days, the fever had worsened and I went to a local clinic. When I told the doctor that I was born with a congenital heart defect, he followed the proper standard of care: He took a blood sample and sent it in for priority testing. Within 12 hours, he called me and told me I had an infection in my bloodstream and needed to go the emergency room immediately. I was quickly diagnosed with endocarditis, a bacterial infection in my heart. It took two months of extremely powerful antibiotics to eliminate the infection. Infective endocarditis can be fatal. I survived with no damage because the doctor in the local clinic followed the proper standard of care.

By ACHA on 9/20/2013 9:46 AM

By Michael Pernick

This blog series will feature a story involving congenital heart disease and the law. The blog posts may discuss contemporary or historical court decisions, laws or regulations, or other legal issues that relate to CHD. These posts are purely for entertainment and educational purposes and are not legal advice. Any opinions expressed in this series of posts are solely those of the author and do not represent the Adult Congenital Heart Association. The names of the parties involved in this matter have been altered.

Medical malpractice is a controversial issue. I’m not going to wade into this debate—instead, I will share two stories (in two separate blog posts) involving children born with CHD, each of which resulted in a medical malpractice lawsuit. My goal is not to pass judgment on whether these cases where rightly or wrongly decided, but instead use these cases to help answer a simple question: What does it generally take to win a malpractice suit?

By ACHA on 7/19/2013 10:42 AM

By Michael Pernick

In my first government job several years ago, I worked as a junior legislative aide for a legislator in New York. My responsibilities mostly focused on constituent services: When a resident of the district needed help, it was my job to try to help them cut through bureaucracy and get them the best possible services out of their government. Occasionally, instead of coming in with complaints about potholes or issues with their property assessment, people came in to share personal stories that spoke to the need for broader policy change.

Elected officials and their staffs hear from special interest groups, lobbyists, and organizations with policy suggestions many times each day. But it is surprising how rare it is for actual people to come in and tell personal stories – and it is astounding how effective those rare stories can be at catalyzing action in a legislative office.

By ACHA on 6/18/2013 11:15 AM

By Michael Pernick

As a child growing up, my mom, like all loving mothers, always told me I was special. She always told me I was the smartest, nicest, and cutest boy in the world (now she looks at me and asks “what happened?”—but that’s besides the point). But I knew I was different, and not for the reasons my mom mentioned. I was the only child in school with a big bump on my chest. I was the only child in school with scars running up and down my upper body, side, and back. And I noticed that when I went out to the playground, I would get tired much more quickly than the other children. I knew I was special, but not for the reasons my mom told me.