Are you 1 in 100? Is your sweet son or daughter 1 in 100? I am, and I’m proud to admit it. 1 in 100 newborns are diagnosed with a congenital heart defect. I was in 1977, repaired at six weeks old, but now with complications as an adult. Totally pumped (pun intended) about World Heart Day on September 29, this blog is sprinkled with information, insight, and inspiration for cardiac patients of all ages, their families, and our community.
Extremely grateful to have nearby academic hospitals to address cardiac concerns, 25% of congenital heart defect patients require surgical repair. Over 85% of us live beyond 18 years of age where 100% require life-long follow-up care. Speaking on behalf of my pediatric therapy CHD patients, as well as my adult CHD cohorts, we’re a complex but strong-willed group fighting on the inside so we can love life on the outside. Here’s a little insight from different perspectives that may occur on a typical follow-up visit for a 1 in 100 child!
Imagine a sweet little one holding her mom’s hand wandering through the vast hallways of the children’s hospital, anxiously wondering what today’s medical appointment will hold. As she looks at the colorful artwork adorning the sterile-looking walls, her inner voice speaks inquisitively.
From The Mind Of A Child:
“Do they really think these pictures make the needles hurt less? Please. Needles are evil.”
“If they order more tests, they’d better give me extra stickers or a treat! A cookie. Something.”
“Maybe that rough nurse has the day off, maybe that’s what she needs.”
“What do the other kids have wrong with their heart? No way I’m the only one.”
“I hope this lasts long enough to get me out of school for the day!”
Children and young adults have amazingly resilient confidence and perseverance when surrounded and encouraged by loving, motivating adults and friends. Young cardiac patients need healthy food, healthy attitudes, and healthy activity to keep them progressing! Never underestimate the power of mental positivity to overcome physical challenges.
From the mind of a parent (according to my mom and my patients’ moms):
“Maybe if I distract her by looking at the artwork, she won’t cry so dang loud this time.”
“Hopefully the insurance covers whatever the doctors order this time.”
“I am so glad these doctors and nurses are sweet or I may lose it, go off and hurt some feelings!”
“Am I the only parent going through this? Who feels this way? My God, I feel alone.”
“I hope this appointment doesn’t take too long so she doesn’t miss the rest of the school day!”
Moms and dads, families, and foster parents of children and adults with congenital heart defects need any emotional, spiritual, and physical support you can give. Here in the Lowcountry, we have resources available for different types of support. Parents and caregivers tend to neglect their own needs and health while tending to their loved ones. Avoid this at all costs. Caregivers cannot provide care if they aren’t healthy and happy themselves. Reach out for help and offer help when it’s needed. Never underestimate the battle between strength and emptiness of a mother or father as a result of battling emotional and financial turmoil to save their child.
From The Mind of A Healthcare Provider
“This child isn’t falling for this artwork as a distraction, and wow her lungs are strong today!”
“My God, these parents are so strong. I don’t know if I could handle what the doctor may say.”
“I bet this child wishes I had taken today off so they didn’t have to deal with me.”
“These children are absolutely amazing, and since they can fight through anything, I can, too.”
“Did this child seriously just tell me to take my time with her so she can skip school today?”
Healthcare providers have the opportunity to educate, inspire, and motivate patients, parents, and adults in our community on the importance of cardiac care beyond World Heart Day. Cardiac education can be shared daily for adult and youth heart disease, heart attack prevention and recognition, stroke prevention and recognition for all ages. We see caregivers of all ages neglect themselves as they care for an infant or adult affected by heart disease. Never underestimate sharing health and wellness prevention and treatment in order to save the lives of others.
What can you do this World Heart Day to educate, support, and inspire?
In honor of World Heart Day, it’s vital to take the time to educate yourself and share information on heart disease so we can encourage health and wellness in our Lowcountry! We have the 2018 Lowcountry Heart Walk on September 29, 2018 which helps bring financial resources and education to our area. In addition, one key component of saving lives in any cardiac event is to get CPR certified! CPR guidelines are simple, effective, and may help save someone’s life as you’re walking down the street, when you’re at the ball field, or even in your own home. Take World Heart Day to recognize how important every heartbeat is in our beautiful community! Understand that the 1 in 100 counts on the other 99 to be right there with them experiencing this gorgeous life.
