Raising Awareness: Congenital Heart Defects

Inspiring stories are always hitting the FBB and FBG in-boxes. We started sharing Reader Success Stories so that we could keep the circle of inspiration going. It was only a matter of time before the stories started rolling in on the baby end of the spectrum, so here we go!

Kelly M., whose daughter Chloe was born with aCongenital Heart Defect (CHD) in 2008, recently wrote to FBB:

“I never even knew about CHD until she was born. So many babies go undetected until birth or even days/weeks/months after. I thought it would be great to raise awareness for CHD, considering the fact that it is America’s #1 birth defect! Maybe also shine some light on the signs and symptoms in case some babies go home with an undetected CHD.”

Chloe’s story is both heartbreaking and inspiring. Her heart defect was discovered nine hours after her birth with the help of mother’s intuition and a pulse oximetry screeningnot standard on newborns. Thanks to her instincts, Kelly ensured that her daughter got the proper care—even after being told several times that all was fine. After an open heart surgery at four months, feeding tubes, and another surgery for an extremely rare birth defect in her neck, Chloe has had a tough road but is now doing well, as can be seen in the photo below.

Since Chloe’s birth, Kelly has been an advocate for CHD awareness. She has worked to get Chloe’s Law passed in Missouri, which would make pulse oximetry mandatory on every baby born in the state. It would be part of the newborn screening requirements at every hospital in the state and would be performed after the first 24 hours of birth but before discharge. It is a fast, easy, painless and inexpensive way to screen for CHD. While it won’t catch all heart defects, it will catch some. Kelly hopes the law will be passed this year.

Chloe’s story reminds me of how lucky most people are when it comes to the health of their kids. My preemie daughter only spent a week in the NICU, and I can attest to how difficult it is to  have monitors and wires hooked up to your child; I can only imagine the difficulty and worry in coping with several major surgeries and procedures. Check out Kelly’s website for more information about Congenital Heart Defects, and learn the signs and symptoms of a potential heart problem.

Signs of a Problem in Newborns

• Rapid breathing
• Cyanosis (a bluish tint to the skin, lips and fingernails)
• Fatigue (tiredness)
• Sweating while feeding
• Not gaining weight (failure to thrive)
• Poor blood circulation

Older children who have congenital heart defects may get tired easily or short of breath during physical activity.

A big thanks to Kelly for sharing Chloe’s story. What a tough little cookie! —Erin