Wednesday, February 8, 2012

it's all about the hearts this month.

Want to see just how awesome modern medicine can be?

Then go here

I loved reading the comments here, and I'm slowly working my way through each and every person's story.  I am now "friends" with another heart mom whose son, Will, had the same defect as Preston thanks to The Faces of CHD pinterest page. She's the only one I've come across and I'm grateful to "know" her.  

Though there are a lot of success stories, there are some babies, children, adults who did not live to tell their own story. Reading about those takes my breath away.   I'm not sure why some live and some die.  I like to believe that God needed them more than we needed them...that they are just that special (Jeremiah 29:11, Psalm 139:13) I will continue to believe that; however, I do believe also that more needs to be done to help diagnose congenital heart defects earlier.  

I truly believe that Preston would not be here today without his cardiologist spending countless hours reviewing his echos trying to figure out exactly what his defect consisted of.  Had they not been aware or prepared there would have been no fixing his defect during the "calm before the storm." We were the lucky ones.  There are too many others who went undiagnosed... then the storm hit... it proved to be too late for some.  Because of that, I'm posting about CHD.  I wouldn't wish CHD on anybody, but I do hope and pray for timely detection and diagnosis of those who do have congenital heart defects before it's too late.  

CHD facts from

  • Congenital Heart Defects are the #1 birth defect worldwide
  • Congenital Heart Defects are the #1 cause of birth defect related deaths worldwide
  • About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect in the United States (approx. 40,000/year)
  • Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects
  • Each year worldwide 100,000 babies (under one year old) will not live to celebrate their first birthday
  • Each year in the United States approximately 4,000 babies (under one year old) will not live to celebrate their first birthday
  • The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year
  • Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research
  • The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD
  • Though research is ongoing, at least 35 defects have now been identified
  • Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood
  • It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications


Cheryl E. said...

Oh P is such a blessing and the storm has only seemed to make you stronger with God. You are truly an amazing strong Mama.

Melissa said...

This is a great touching story! I love your insight. I remember a post you did on a wine that contributed to heart research. I actually bought the wine and it was great! You should use that for your product review....every bit counts to spread awareness and contribute to research!

♥Jess said...

Reading that pin was hard to swallow. It broke my heart however I'm so happy to have seen Preston grow these 12 months. He is a miracle from GOD.

Meagan @ The Clanahan Fam said...

Amen, amen, amen! 100% agree. I think that we as parents were better prepared for what was to come because they diagnosed Quinn's defect so early on. So many are not identified because a lot of them do not become identifiable on an anatomy ultrasound until 22 or 23 weeks. I had 4 anatomy ultrasounds b/c of being high-risk BEFORE it was identified. What if I hadn't been high-risk? We had the gift of precious time to find the best place for Quinn and the best surgeons for her. And so many insurance companies will only cover 1 or 2 anatomy ultrasounds - which are typically done 18-20 weeks, well before some defects can be seen. I'm there with ya, sister! And I have told every pregnant woman I know to make sure the hospital takes the 2 seconds to slap on the pulse ox machine during the regular newborn screening after birth. So many defects have been found that way -- but I've heard of too many stories of babies being sent home, only to return days and weeks later, blue and in heart failure - losing that precious window of the "calm before the storm". Ok, off my soap box : ) Thanks for continually sharing information!

Missy said...

Seeing your post and that pic of P on his "birthday" always brings a tear!

Having lost my brother to a CHD, which was discovered at birth) and seeing everything you guys have gone through. I think early detection is a must and that all babies should be monitored for heart defects.

Praying each day will bring more and more happy endings for all precious heart babies!

Happiness Is... said...

Thank you for continuing to be so brave in what you share - while this does not currently impact us directly, I agree that more needs to be done to detect and treat this, as Preston is a testament to the miracle of both the Lord and modern medicine - we can never give up or stop praying, and I hope that there are many more stories like Preston's in the future.

Anonymous said...

I'm so glad to "know" you as well! Never imagined I would meet someone else with Will's defect :-) -Jenn