Close to the Heart

The week of February 14th is declared by many states as "CHD Awareness Week". This gives us parents an excellent opportunity in bringing awareness to the #1 birth defect.

Many of you know that last April Emma was diagnosed with a muscular ventricular septal defect (vsd), a congenital heart defect (chd). Although this was a heart defect that she was born with, it was never picked up on any of her ultrasounds in utero nor was it picked up after birth. It wasn't until she developed a double ear infection with a high fever last March that the doctor discovered a heart murmur. We were immediately referred to a pediatric cardiologist in Boston at the Tufts Medical Center Floating Children's Hospital. It was after a long afternoon of tests that the doctor told us of his findings. He was not overly concerned and said that we would monitor it and do a follow-up in a year.

So what is a ventricular septal defect? In layman's terms it is a hole in the heart. For a more specific explanation of it Boston Children's Hospital explains it perfectly and simply. The doctor is hoping that Emma's hole will close on its own without any medical intervention (surgery).

Did You Know?

* Congenital Heart Defects are the #1 birth defect. Source: March of Dimes
* Congenital Heart Defects are the #1 cause of birth defect related deaths. Source: March of Dimes
* About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year) Source: Children’s Heart Foundation
* 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 CHD. Source: Children’s Heart Foundation
* 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. Source: Children’s Heart Foundation
* This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation
* The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year. Source: Children’s Heart Foundation
* Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation
* 14-16% born with CHD have Ventricular Septal Defects
* 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. Source: March of Dimes
* 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. Source: March of Dimes

March of Dimes

We have been very fortunate that Emma's vsd has not hindered her in any way and she has been able to lead a very normal and active life, We still realize though how important CHD research is and how it effects our lives. We are grateful for the research that has been done and continues to be done.