Recent Entries
Looking for Answers
One Small Pebble
When It’s Time for Surgery
Parents Have a CHD Story, Too
When You Find a Member of the CHD Club
Your Role in Your Healthcare Team
The Knowledge to Answer the Pregnancy Question
"The Shoes Stay On"
My Normal
Pretending To Be A Normal Person


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.

Author: Created: 5/17/2011 1:10 PM RssIcon
Our ACHA bloggers will post about many topics relevant to the CHD community.
By ACHA on 2/25/2015 8:32 AM

By Becca Atherton

I was expecting a phone call from the surgeon sometime this week, so my mom kept her cell phone with her at all times. Every time it rang or buzzed, our anticipation rose and we all looked over at her with an expectant face. My heart would swell with hope every time it went off, only to be deflated each time.

By ACHA on 2/20/2015 9:01 AM

By Michael Pernick

In what has become an annual tradition for me, once a year I travel down to Washington, D.C., to spend a day talking with my legislators on the Hill about why additional support for CHD is critically important. We all know the talking points—heart defects are the most common defects, one in 100 babies are born with a defect, yet we have no surveillance and tracking for children as they age, and the vast majority of adults don’t get the care they need.

By ACHA on 2/17/2015 12:47 PM

By Deb Flaherty-Kizer

“She’ll never live.” These were the first words a new mother heard from the attending nurse when her child was born. The baby was blue, weighed less than four pounds, and had some type of serious heart “problem.” That child was me.

As a child, I never really understood exactly what condition I had or what the severity of it was. My pediatrician only noted that I had a heart “murmur,” my heart sounding like galloping horses. In hindsight, I can appreciate that in the late 1950s, medical science and diagnostic tools weren't where they are today, making an accurate and complete diagnosis difficult.

By ACHA on 2/11/2015 10:26 AM

By Kim Russell

When I expressed interest in writing this blog, I had no idea how hard it would be to express to parents how much CHDers genuinely appreciate them. What better way than to say, “Thank you! Thank you from the bottom of our hearts!”

Magazine articles, websites, Facebook pages and organizations report that 1 in 100 babies is born with a CHD. Usually facts about these children and their struggles of dealing with CHD are listed: illness, surgeries, recoveries, and challenges that meet each CHDer the minute he/she is born. Each child has his/her own story and all of them are miraculous.

By ACHA on 2/9/2015 2:21 PM

By Daniel Spandau

I was dropping off my dry cleaning the other day. As I was helping the lady sort out the shirts, I noticed that thin, telltale scar on her chest. “Oh,” I thought to myself, “she is a CHD club member.” I’m the kind of person who doesn’t feel uncomfortable sometimes stepping over the line and saying something too personal to a stranger.

“Open heart surgery?” She looked up with a smile and “yes.” The woman looked to be in her 50s and she very proudly told me that she had the surgery in Cali, Columbia, 45 years ago. She said she was the first person ever to have surgery in the city, continuing with “….and I don’t take any medication.”

By ACHA on 2/5/2015 2:09 PM

By Christy Sillman

The patient is the most important member of the healthcare team. You know your body the best, you’ve been living with congenital heart disease, and you’ve got the firsthand account of your medical history. For some people, managing their health can be a full-time job, and I want to share some ways you can help succeed in collaborating with your team.

By ACHA on 2/3/2015 10:42 AM

By Misty Sharpe

If your Facebook news feed is anything like mine, it seems like there have been a barrage of posts by soon-to-be parents announcing their upcoming bundle of joy. You also may find yourself the subject of many asking the question, “When are you going to have children?” For many, including myself with congenital heart disease, this question isn’t easily answered.

I have always wanted to be a mom. I remember always smiling whenever someone would call me “Little Angie” because I looked so much like my mother and thought how special it would be to have my own biological child one day. CHD, however, can hover like a black cloud over your pregnancy parade.

By ACHA on 1/29/2015 2:13 PM

By Brenna

On the Friday before Labor Day, many years ago, I was excited to meet a friend for a girls’ night out in Los Angeles with dinner, drinks, dancing—the whole enchilada of fun (maybe even some awesome enchiladas). Instead, I was directed by my doctor to go to the closest ER to get an EKG.

I had been feeling a little slow, lethargic, even light-headed. My mother and I met at the ER after work. The doctors told me to change into a hospital gown in order to run a few more tests. I was in a nice brown dress and my favorite new shoes, green and brown silk open-toed with a 4-inch wooden wedge—totally worth the price. I told them, "OK, but the shoes stay on."

By ACHA on 1/27/2015 11:55 AM

By James Bachenheimer

CHD is the best thing to ever happen to me.

Growing up in the 1980s and 90s with a congenital heart defect was not easy and it sure did not feel "normal." After all, my generation had to rely on playing outside, which was something my little defective heart could not tolerate well. In typical Jimmy fashion I would play till I passed out or ended up in the hospital with my doctor always saying, “Jim, you know your limits.” Of course I knew my limits, but even at an early age I would push myself until I fell over—I just wanted to be normal.

By ACHA on 1/22/2015 12:38 PM

By Lorelei Hill

Last Saturday, as I sipped my morning coffee I looked at my family and smiled. In that moment everything felt “normal.” My favorite mug reads, “Pretending to be a normal person day-after-day is exhausting.” I read the caption and laughed. I purchased this mug as a gift, then found I could not give it away. This message spoke to me.

As a girl growing up with CHD, I tried my best to keep up with my friends. When my condition got in the way, I had no other choice but to step back from my normal life and let others care for me again. As I grew, I was fortunate enough to feel good most of the time. The better I felt, the less inclined I was to exchange my everyday life for one as a patient. I just wanted to fit into the world without having to be concerned about my next hospital test or clinic visit.