Congenital heart disease affects kids and adults

Michael Pernick says his childhood was "normal, but  Credit:
Michael Pernick says his childhood was “normal, but a bit difficult.”
Credit: Michael Pernick/Adult Congenital Heart Assocation

Within seconds of Michael Pernick’s birth, it was clear something was wrong. He was what’s called a blue baby: His blood was not carrying enough oxygen through his tiny body.

Within two days, Pernick underwent surgery for a congenital heart condition known as Tetralogy of Fallot. Another surgery followed a few years later and then, two years ago, his third surgery repaired his heart valves. However, when a nearly fatal post-operative infection developed, things turned serious once again.

“I was so lucky to have a good team who knew all about me,” says Pernick, now a healthy 25-year-old. “I had great pediatric cardiologists and I was lucky to have a specialist as an adult. The difficulty is many people with congenital heart disease don’t have a specialist. Less than 10 percent have adequate care as adults,” says the Roslyn Heights, N.Y., native.

Dr. Jonathan Ginns, an adult congenital heart specialist at Columbia University Medical Center and a member of the ACHA Medical Advisory Board, agrees: “There’s only 500 certified doctors in the country and they’re mostly in the big learning institutions. There aren’t enough trained specialists working in the general medical field. Patients need a physician for their general health care who is board-certified [in] ACHA.”

Congenital heart disease is never cured. It’s a lifelong condition, corrected by surgery and sometimes involving medications.

“There are 30 different conditions that are classified as congenital heart disease,” says Ginns. “It can be any problem from a hole in the heart, to narrow valves, to malgrowth of one of the chambers. Or even blood vessels in the wrong location. It’s basically defects in the structure of the heart.”

Pernick, who is an Adult Congenital Heart Association ambassador, says his childhood was “normal, but a bit difficult. I got tired very quickly in the playground. So I never really played sports. As an adult, I try to be healthy, but I can eat anything within reason, the same as anyone else.”

 

What causes it?

Congenital heart disease is believed to be genetic and not linked to environmental elements in utero: “Elements of exposure are not the biggest concern; we suspect a lot of it is genetic,” says Ginns. “But, because these genes are so complex, it’s difficult to pinpoint genomes. Currently, there’s a huge NIH study of thousands and thousands of people with different conditions. It’ll take a while to sift through the genomes.”


News
Entertainment
Sports
Lifestyle
National

Rapper affiliate of Wu-Tang Clan 'cuts off own…

Rapper Andre Johnson, who has performed with New York outfit the Wu-Tang Clan, is in a critical condition after reportedly cutting off his own penis…

National

Cleavage complaint: Disneyland staffer orders curvy mom to…

A curvy mom-of-three says she filed a formal complaint after staff at Disneyland Resort in California ordered her to cover up her boobs. Melissa Behnken,…

International

Canadian charged in 'Heartbleed' attack on tax agency

OTTAWA (Reuters) - Canadian police have arrested a 19-year-old man and charged him in connection with exploiting the "Heartbleed" bug to steal taxpayer data from…

National

Every dog has his day in court, in…

(Reuters) - Call him juror K-9.A computer glitch is likely to blame for a summons that called a German Shepherd to report for jury duty,…

Television

‘Survivor: Cagayan’ recap: Episode 8

Sure, it's called Survivor. But this season should really be called 'The Tony Show.'

Television

Jim Rash talks 'The Writer's Room' and amazing…

For Jim Rash, as the fifth season of "Community" comes to a close, the second season of "The Writer's Room" begins.

Television

'Dexter' star Jennifer Carpenter moves into producing role

The actress who played the title character's sister in "Dexter" is teaming up with producer George Stelzner to adapt Erika Hayasaki's book "The Death Class:…

The Word

Wahlburgers announce North America domination

Tuesday was a huge day for Donnie Wahlberg.

MLB

MLB video highlights: Red Sox beat White Sox…

Red Sox walk 15 times in extra innings win

NBA

Kris Humphries on free agency, future with Celtics:…

Kris Humphries on free agency, future with Celtics: 'I hope to be back'

NBA

Celtics turn attention to NBA Draft, improve lottery…

Celtics turn attention to NBA Draft, improve lottery odds with loss

NFL

2014 NFL Mock Draft: Updated, new April version

2014 NFL Mock Draft: Updated, new April version

Wellbeing

This Week in Health: chocolate may prevent obesity…

Can chocolate prevent obesity and diabetes? Location of study: U.S. Study subjects: Mice Results: The positive health benefits of chocolate have been studied increasingly more…

Wellbeing

This Week in Health News: breastfed infants trying…

Are breastfed infants trying to prevent mom from having another baby? Theory: The act of breastfeeding not only brings mom and baby closer together –…

Wellbeing

Unexplained infertility may be caused by lack of…

Researchers have identified a protein on the egg's surface that interacts with another protein on the surface of sperm, allowing the two cells to join.

Tech

5 surprising facts about Google Glass

Your sex life could get more interesting.