Heart Week

Ronan's "zipper"

In my last post, I talked about the odds.  The odds of having a child with a congenital heart defect are one in 100.  Even typing that seems wrong to me - it seems like it should be far more rare.  Given that I went into the hospital to give birth to Ronan thinking I had a healthy baby, I never gave it a second thought that he could have any defect, let alone a heart defect.

A friend mentioned to me the other day that he didn't realize those were the odds.  I had made a comment about the prevalence of congenital heart defects, and that 50% of all children born with congenital heart defects will require at least one invasive surgery in his or her lifetime.

Let me say that again.

50% of the 1 in 100 children who are born with a congenital heart defect require at least one invasive surgery.  That is 1 in 200 children.  Congenital heart defects are the leading cause of death for infants.  Twice as many children in the US die from a congenital heart defect each year than all forms of childhood cancer combined.  Funding for pediatric cancer research is five times greater than funding for CHD research.

How is this not at the forefront of news? I see St. Jude's commercials all the time.  Pediatric cancer is horrific, but how is something that kills twice as many children hidden behind those stories?

Case in point.  Here is Shaun White's St. Jude commercial.  While it is wonderful that he took time to shoot this commercial, what you may not know is that Shaun White has a congenital heart defect.  Moreover, it is a complex one - Tetralogy of Fallot.  He had to go undergo two open heart surgeries.  Why isn't this commercial about congenital heart defect research and overcoming those odds?  Why isn't this commercial about pulse-ox testing for children before the leave the hospital? 

While we are talking stats and funding, only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.  Of every dollar the government spends on medical funding, a fraction of a penny is spent on congenital heart defect research.  But what does this really mean?

Ronan is lucky in the world of congenital heart defects.  His, while requiring life long management, is one that can be easily monitored and controlled.  Ronan had open heart surgery at 6 weeks to correct his pulmonary valve.  Unfortunately, they cannot replace a valve at that age, they can only provide a band-aid that will hopefully last for awhile.  He will require additional interventions in the future.  Here's the thing, though.  His next intervention could be a cath procedure rather than open heart surgery, provided the technology is there.  Rather than having his chest opened up, having an extensive recovery, and having all the things involved with open heart surgery, he could have a cath procedure.  Provided the research has been done.  We are close, so very close.  This leap could be made within the next 10 years, which would place Ronan right in the cusp of potentially benefiting from this leap in congenital heart defect management. 

There are very few organizations that primarily fund congenital heart defect research.  The Children's Heart Foundation is one of the few.  If you want to do something, consider becoming involved with an organization such as this one.  You can also donate to your local children's hospital, and designate the funds be used towards cardiac research. Let's not make this little guy go through another open heart surgery. 

Wearing red for congenital heart defect awareness