Susan Timmins: Join me in celebrating this Congenital Heart Week

It's almost Feb. 14, a time when thoughts turn to pink Valentine's cards, to red roses, to love -- and to all things hearts.

There is a special kind of heart that 1 in every 100 families is thinking about in particular this week -- these are the hearts that have congenital defects.

These hearts beating in children and adults formed a little or a lot differently before birth. They may be missing some structures, or some parts are misplaced, or the blood vessels leading into or out of the heart may be routed the wrong way.

Feb. 7-14 is Congenital Heart Week. State by state by state, parents have pushed for declarations, and an effort is under way for this week to finally be recognized nationally.

My thoughts this week are with a sweet little 3-year-old boy I visited recently in a children's hospital, who was placed on a heart transplant list after three open-heart surgeries and a multitude of procedures. He and his family are living in his hospital room, making life as "normal" as they can while they wait.

His days are punctuated by breathing treatments and feeding tubes and blood work. But his parents infuse his days with so much joy and hope, and in between his treatments he has a smile that lights up a room. He tells visitors that when he gets his new heart, he will be able to go home.

There are children and families like this one all over our country living in hospital rooms.

These children learn early on to fight and to be resilient. They don't have a choice. Their parents are fierce, loving, committed and strong. Every parent knows sleep deprivation and worry. But a cardiac parent knows about sitting beside a bedside for days or weeks or months on end.

Waiting and hoping for breaths, monitoring blood oxygen levels and pulse rates. Counting food intake in milligrams and liquid intake in cc's. Handing their precious child over to a heart surgeon and their team, and having to wait the longest of hours on the other side of the door.

People often ask these parents how they do it, and comment that they don't know how they find the strength. Well, these

parents didn't raise their hands and say "Give this challenge to me." It's like a roll of the dice as to which hearts form correctly and which don't. This is their child, this is their life, and they rise to whatever is needed. You would do the same.

Some 40,000 children are born in America each year with a heart defect.

Twice as many children die of congenital heart defects than of all childhood cancers combined.

Congenital heart defects are the most prevalent of all birth defects, not just in our country, but worldwide.

Thankfully, because of amazing improvements in pediatric heart surgeries, more and more people with heart defects are living into adulthood and far beyond. They will, however, need specialized cardiac care throughout their life.

Still, 1 in 100 children everywhere are born with a heart defect.

Their futures depend on research.

The research depends on funding.

The funding requires awareness -- more of us need to know about heart defects. Chances are if you think about it, you probably know someone who has a child, or a niece, or a brother, or a co-worker with a heart defect.

Congenital Heart Week is a chance to celebrate these children and these adults, along with their parents -- and to thank the doctors, nurses and researchers who have dedicated their careers to saving and improving their lives. It's also a week to raise awareness for critically needed research: research to figure out the causes so we can prevent these defects in the first place, and research to improve surgical outcomes, to reduce complications, to lengthen lifespans and to increase quality of life.

Later this month I'll be joining patients, parents and healthcare providers in Washington, D.C., to ask our lawmakers to continue and to increase funding congenital heart research at the Centers for Disease Control and Prevention and the National Institutes of Health.

Why do I know what it's like to kiss a child goodbye on their way into heart surgery?

Because I am one of those mothers, we are one of those families, the 1 in 100.

It's not a place anyone asks to be, but it's a special and sacred place, and I am honored to be here.

Susan Timmins, local business owner, mother and Anna Maria Island resident, can be reached at sktimmins@ aol.com.

Coming next Sunday: Amanda Horne writes about choosing to be lucky and blessed.

This story was originally published February 8, 2015 at 12:00 AM with the headline "Susan Timmins: Join me in celebrating this Congenital Heart Week ."