The Heart of the Matter

I would never, ever wish this journey on anyone.

It’s draining, it’s emotional, it sucks.

But, one thing I have gained from all of this is knowledge and awareness.

As a mother, we are advocates for our children.  One of the first instincts we have is to protect them.  And yes – there is such thing as knowing too much.  Knowledge is power but often power can drive you crazy.

However, in the past few weeks, I have learned so much about congenital heart disease.

Here are some startling facts:

Congenital Heart Defect Facts

  • 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
  • Though research is ongoing, at least 35 defects have now been identified.
  • 4-8% born with CHD have Hypoplastic Left Heart Syndrome
  • 4-10% born with CHD have Atrioventricular Septal Defects
  • 8-11% born with CHD have Coarctation of the Aorta
  • 9-14% born with CHD have Tetralogy of Fallot
  • 10-11% born with CHD have Transposition of the Great Arteries
  • 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

 

If you are a parent, you may be familiar with APGAR numbers to assess your newborn at birth.  Did you know that a baby with great APGAR numbers can still mask a congenital heart defect?

There is new legislation that has passed in two states for the use of a Pulse Oximeter within the first 24 hours of life.  In layman’s terms – a pulse oximeter measures the blood gases in your blood – namely – Oxygen.

If you are interested  – check out this article about how this non-invasive, inexpensive procedure is able to catch undiagnosed congenital heart defectes.

Although the days until I deliver have been very emotional and difficult – we feel extremely blessed to know that as soon as Baby arrives – a fleet of doctors, nurses and specialists are ready and prepared to deal with Baby’s problem.

So many children aren’t as fortunate. There are too many deaths in childhood, adolescence and adult-hood of undiagnosed heart defects.  Too many stories of infants rushed to the hospital a few hours too late.  Too many stories about our youth dying on the football field because of an undiagnosed congenital heart problem.  Too many….

Educate yourself – it could save a life.

 

 

Comments

  1. I stumbled upon your site somehow and I love the way you write. You are totally right about the APGAR scores. My son now 10 months old, was born with an APGAR of 9 Perfectly pink and just perfect !!! Had he not been diagnosed in utero with HLHS, we wouldn’t be able to give him the best medical care immediately after birth. I’m not sure what CHD your child will be born with, but my son went through 2 open heart surgeries very well and everyday gives me sooo much hope for the future. It’s a scary journey, but somehow a mother can always find the strength to go through it. You just have to. Good luck !

  2. Cora scored 9 on both AGPAR tests. Five days later, she died in my arms suddenly and unexpectedly of an undetected CHD.

  3. Hope also had APGAR scores of 9 and thankfully we knew about her HLHS before she was born. She was MUCH pinker than anyone expected. We were able to keep her with us for several hours (after they placed her Prostoglandin drip in her umbilical cord) before she was transferred to the Children’s Hospital. I was able to go with her…which was very unexpected and made for a very happy mommy.

    Thank you for this wonderful post. The information on CHDs is so limited and even people with CHDs don’t realize how common they really are. Awareness is something most heart mommies spend a lot of time trying to raise.

    Many prayers coming your way for an easy labor and delivery.