Jaclyn Hardy of Lanoka Harbor has become an advocate of education for Congenital Heart Disease since her one-year-old was diagnosed. Today begins Congenital Heart Defect Awareness Week, an annual awareness effort to help educate the public about Congenital Heart Defects and Hardy is speaking out:
Since I last updated you Zoey had her third surgery, this one was open heart to repair her three Ventricular Septal Defects (holes in the heart) and take her Pulmonary band off. Zoey did very well from this surgery. In fact, she was walking two days after Open Heart Surgery and smiling only hours after.
Zoey Rhyann Hardy was born on July 11, 2011. On July 17, 2011 she was rushed to JSMC in Cardiogenic Shock. That is where we learned the term CHD or Congenital Heart Disease. We were told they didn't think she would live more than a few hours.
If we didn't bring her in that day, I would have put Zoey to sleep and she never would have woken up. This happens to so many CHD undiagnosed infants.
Zoey was airlifted to the Children's Hospital of Philadelphia where she spent the next six weeks. She had two surgeries -- one was for her Coarctation of the Aorta, which is a narrowing of her Aorta causing no blood flow to the bottom half of her body, and a Pulmonary Band on her Pulmonary artery to help with her three large VSD's, Ventricular Septal Defects, or commonly referred to as "holes in the heart." Zoey had also suffered something called NEC or Necrotizing Enterocolitis a condition that causes death or necrosis to portions of the colon due to lack of oxygenated blood.
This week is very special to our family, not just Zoey and my relatives but all CHD warriors, survivors and angels.
Approximately one in 100 babies are born with Congenital Heart Disease. It's the most common birth defect in the world, yet very many people have no idea what this term means. That is my goal in Lacey Township and for all of NJ to become more aware, especially the pregnant women and couples planning on having a family. The numbers keep rising and I know when Zoey attends school, she will not be the only one with a form of Congenital Heart Disease.
Approximately 40,000 babies are born in the US with Congenital Heart Disease, 4,000 will not reach their first birthday, and thousands more will die before they reach adulthood.
Pulse Oximetry testing was passed in NJ in August of 2011 by Gov. Chris Christie. Currently there are only seven states that have this test as part of the newborn screening. But when a baby passes the Pulse Oximetry is a probe that is placed on a newborns foot or hand that measures the level of oxygenated blood, anything less than 95 percent in three measures or less than 90 percent initially is a positive screen, that would be an indicator for a diagnostic Echocardiogram or a transfer to a higher level facility.
When a baby passes the Pulse Oximetry Screening, parents will assume the baby does not have a defect. This is very scary since there is no 100 percent screening tool that will detect CHD. The Pulse Oximetry test only detects 75 percent of defects. Parents should be taught the warning signs and symptoms for Congenital Heart disease before discharge if a screening was normal.
1. Shortness of breath in a infant: breathing that seems fast or if the baby has nasal flaring or excessive use of stomach breathing.
2. Difficulty feeding: this occurs because the baby has trouble breathing.
3. Blue Lips and skin: a dusky grayish color. Some defects can lead to a mixing of blue oxygen depleted blood from veins causing cyanosis - lack of oxygenated blood.
4. Tires easily: either during feeding, having to wake baby constantly to feed, or a baby sleeping more than usual for a newborn.
5. Increased heart rate for a newborn: normal heart rate for a newborn is 120 to 160 beats per minute, anything higher or even lower.
Zoey presented with all of those signs. When we brought her to the hospital it was almost too late. I have spoken to quite a few moms whom have had children with a late diagnosis such as Zoey's Coarctation and they did not survive. We were very blessed.
Congenital Heart Defects kill more than all childhood cancers combined every year, yet funding for Pediatric Cancer is five times higher than Congenital Heart Disease, according to the Children's Heart Foundation.
On Jan. 24, Mayor Most presented to me a Proclamation for the week of Feb. 7 through 14, Congenital Heart Defect Awareness Week. On Feb. 1, Gov. Christie signed the Proclamation for Congenital Heart Defect Awareness week, I personally received a beautiful email, an electronically signed copy and on Feb. 4, an original copy was mailed to my home.
Please wear red during Feb. 7 through 14 for all CHD warriors and angels. Please also explain why you are wearing red.
Zoey thanks you for all of your support. If I can save one baby from suffering through what Zoey has gone through then my job is done. I will continue to advocate for Zoey and all CHD children.