Thursday, February 13, 2014

Helping Little Hearts

This post may contain triggers for some individuals. The stories we share here though may help other families find the resources and help they need. Thank you so much for visiting here today.

Most of us with children heard our babies heartbeats before we ever saw them on an ultrasound screen.

We eagerly anticipated each appointment because we would get to hear that swooshy, steady gallop.

We speculated about whether it would be a girl because it was 169 beats per minute one week, and then the next we were just sure it was a boy at 135.

There is hardly a more precious sound to expectant parents than that steady evidence of a vibrant life, exceeded in elation perhaps only by baby's first cry.


"In the US, about 7,200 (or 18 per 10,000) babies born each year have one of seven critical congenital heart defects (CCHDs)" 

The above statistic is a direct quote from an article on the CDC website in regard to Pulse Oximetry Screening of newborns.

7,200 babies born EACH YEAR!!

According to the National Dissemination Center for Children With Disabilities, approximately 12,000 babies are born every year with hearing loss. With little exception, every baby born in the United States is given a hearing screening before it is 48 hours old.

This practice is admirable. Many families have been able to intervene almost immediately for reversible conditions, or begin learning how to communicate with their child if their condition is permanent or if they choose to wait for further medical intervention.

Hearing loss, however, is not potentially fatal.

Many congenital heart defects can be, if they are not detected early enough to be reversed or repaired or at the very least, monitored.

So why aren't more hospitals screening for these?!!

I'm going to tell you a story.

I had the fun experience of being pregnant at the same time as one of my best friends. Since my doctor was in her town, we would often have a chance to visit after my doctors appointments. Her son was born seven weeks before my daughter. I went to see them, and snuggle him. They came to see us, and snuggle her. It was wonderful!

At two months old, my daughter I accompanied my mom to Texas to visit with my grandfather for a few days. While I was there, I recieved a heartbreaking call from my friend's mom. Her baby was in the hospital and very sick, there was a problem with his heart.

That night after leaving a voice mail full of "I love yous" and "we are praying so hard for yous", I sat down on a stone wall and cried. I felt so powerless. Waiting was agony, and it wasn't even my child.

I didn't know at the time that this family I treasure were preparing for the worst and even saying their goodbyes to their precious baby boy. A boy who had been alert, smiling, cooing, nursing just that very morning.

A day went by. Then another. The doctors couldn't find the problem. Then when they finally had a theory, they couldn't confirm it with the equipment they had. After what felt like forever, he was taken by helicopter to the Cardiac Unit at the Children's Hospital in New Orleans. Within hours, the doctors there had identified the problem, and at the tender age of three months old, he underwent open heart surgery.

I was back home when I got a late night call from his mom in which she informed me that after the surgery a transparent protective sheath is placed over the surgery site, which is monitored closely for a period of time before they close up the incision site, "Judy! I saw my baby's heart! I saw my baby's heart beating away! The surgery went good and he's going to be ok!!" 

She and her husband lived at the hospital for six weeks, and when they brought him home he had to stay at home for another two months to continue to heal and avoid infection. But, he was home.

Today he's a busy two and a half year year old. He's as sweet as can be, has the bluest eyes, and loves to snuggle, especially with his Mama!

The only evidence of his ordeal is the two medications he still takes daily, and a matching "zipper" on his chest as his Grandpa and namesake. Plus an annual visit to a cardiologist.

Every year 7,200 babies in the U.S. alone are born with a critical congenital heart defect. It is approximated that up to 33,000 more have congenital defects that are not critical or life threatening. That is approximately 40,000 babies with heart defects!

My best friend didn't know that. I did not know that. My husband, mother, sisters, and most of our friends, do not know this! 

There are babies in hospitals all over the world fighting for their lives just like her's did. He won, but other families don't always have the gift of bringing their babies home. And some of those families might have had a better chance of doing that if they knew their baby was at higher risk to begin with.

Would an early screening have meant that doctors might have found her son's defect sooner?

His defect affects only 1 in 400,000 babies.

We don't know for sure. His defect was very rare. It didn't seem to cause symptoms until it suddenly stopped his heart from working properly. A screening in the hospital may not have detected it. But it might have, and it can for many others.

If hospitals screen for hearing loss, which is not fatal, how many lives could be saved if they also screened for critical congenital heart defects, which sadly, can be?

We should not live in fear. But we can be informed. And we can share and help spread awareness so that others can be better prepared as well.

Please, visit the sites I have linked in this post. And then share what you learn with your family, friends, co-workers. Share these links with as many as you can. I would be honored for you to share this post, or a link to it on your social media sites, blogs, or emails. Share your stories in the comments and with each other.

The CHIN website,  has many more links to very helpful information.

The ALCAPA diagram and the information banner below are just a few items my friend shared with me via Pinterest. There is abundant information available online for those interested in learning more. 


Source: Top Nursing Programs

I have not recieved any compensation whatsoever for this post. The links and information I have included is to help spread awareness and provide educational resources. It is a cause very special to my own heart, so I hope it touches others.

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