Mending a Broken Heart – Congenital Heart Defect Week

Celebrating Wear Red Day

When Your Heart is Broken

Expectant parents may experience emotions ranging from excitement to apprehension. One feeling many expectant parents share is hope… hope that their baby will be healthy and everything will be ok. Thus, learning your newborn has health problems is devastating. I know this feeling well, as it has been my journey twice, but that is a story for another day. The story I am sharing today is about a specific kind of broken heart – heart disease and Congenital Heart Defects (CHDs).

What is a Congenital Heart Defect?

A CHD is an abnormality of the heart or blood vessels near the heart. It is not a form of heart disease that develops across the lifespan, but rather is called a “defect” because it is the result of the heart not developing correctly before birth. According to the American Heart Association, there are at least 18 different CHDs. Out of every 1,000 births, at least 8 of the babies will have a CHD (with most of them being mild). The surgical urgency and frequency, additional treatments, and overall prognosis varies amongst the types of CHDs. You can learn more about the detection, treatment and prognosis of CHDs as well as about general heart disease (which is responsible for 1 in 4 deaths in the US) here.

Getting Personal

So other than the fact that I am an exercise physiologist, health and nutrition educator, and am passionate about educating people on the importance of living a healthy life, the topic of heart disease and CHDs is personal. CHDs are the most common birth defect and the cause of infant death from a birth defect. Our second child was born with a rare and life-threatening CHD, as her chance of survival without surgery was 0.

The Will to Live Plus Some Guardian Angels

We have so much gratitude for the amazing nurses, doctors, and surgeons at Seattle Children’s Hospital. Our angel was not expected to survive. Each step of her recovery presented new obstacles, but her care team never gave up – sometimes standing in the doorway for hours to intervene if needed. After nearly a month in the hospital, an intensive care nurse who came to see us off hugged me with tears in her eyes and warned me to “get ready”. She explained that the babies who survived what our angel had come through had one thing in common – an extreme WILL TO LIVE. She proceeded to chuckle and tell me that as our daughter grew this WILL would present itself frequently and intensely. As I was holding my fragile infant, unsure of the road ahead, I chuckled and mentally recorded the words, but it wasn’t until days later that I began to understand.

As she has grown from an infant to a tween, one thing has held true… she has an EXTREME intensity for life. She loves fiercely. She is quick to react. She experiences emotions and the heartaches of the world deeply. When she sets her mind on something, she will invest her heart and soul in making it happen. Parenting her has been an adventure that tests us often, and on the particularly intense moments I remember the nurse’s words. While tough at times, this WILL is the reason we have been able to watch her grow into a young woman!

How Can You Help?

I share with you our story to bring awareness to general heart health and CHDs. You can begin making your own heart health a priority by:

  • Eating healthy, whole foods – including vegetables, fruits, and healthy fats like avocado, olive oil, salmon and nuts
  • Moving your body daily – aim to get at least 150 minutes of physical activity weekly
  • Getting 7 to 8 hours of sleep nightly
  • Managing stress through meditation, journaling, yoga, or relaxation exercises

You can also support American Heart Month by wearing red and spreading the message of living a heart healthy lifestyle and of CHDs. You can support a special CHD organization, Little Hats, Big Hearts™, by making a financial donation or donating small knit or crocheted red hats to their program.

Also, if our daughter had been born 30 years ago, she likely would have died. It is through the generosity of others that researchers and doctors have been able to study how to save babies like ours. We know personally, that care for these babies can exceed $1 million, and the costs extend beyond when the families leave the hospital. Donating to a local children’s hospital can support the research their doctors do and the uncompensated care funds they run. If you don’t have a local children’s hospital to support, Seattle Children’s Hospital is an organization dear to our hearts. We will never be able to repay them for what they have given our family, but hopefully spreading the word of how hospitals like theirs are changing the lives of families can help!

Be Your Own Valentine – Take Care of Your Heart

Whether or not you choose to wear red in honor of American Heart Month or support one of these great organizations, please make a commitment to be your own Valentine and love yourself this year! Take care of your own heart health by living a heart healthy lifestyle.

Your future self says thank you!