Lacey Mother Advocates for National Newborn Screening Awareness Month

Jaclyn Hardy’s 13-month-old baby went in for open-heart surgery today.

On Wednesday, the Lanoka Harbor family prepared for what would be their baby’s second of three open-heart surgeries. Staying overnight in close vicinity to the hospital, the surgeons would open Zoey’s chest for the four-and-a-half-hour surgery.

Hardy could not help but wonder what pain could have been avoided had the family known sooner that Zoey had Congenital Heart Disease (CHD).

“She was born healthy,” Hardy said. “But there’s certain signs now that we didn’t know before that would be indicators of a heart problem.”

Six days after she was born, Zoey returned to the hospital. She was sleeping a lot, wasn’t eating and had blue lips, Hardy said.

“Something wasn’t right. I took her to Jersey Shore University Medical Center. She had three large holes in her heart,” she said.

CHD is a malformation of the heart involving the heart chambers, valves or major blood vessels and is present at birth. Zoey was born with Ventricular Septal Defects (holes in the heart) and an Aortic Coarctation (the narrowing of the aorta), Hardy said.

In August 2011, just one month after Zoey was born, state legislature passed a law requiring all facilities licensed by the Department of Health and Senior Services to perform a pulse oximetry screening for congenital heart defects, a minimum of 24 hours after birth, on every newborn in its care.

New Jersey residents are “extremely lucky” that pulse oximetry testing was passed into law, Hardy said, adding that September is National Newborn Screening Awareness Month.

Pulse oximetry is a non-invasive test, Hardy said. “It’s like a ban aid. No needles involved,” she said.

The procedure measures how much oxygen is in the blood by using a light source and sensor on the baby’s foot, she said. It has been found to be effective in screening for CHD.

“A normal reading for SPO2 or pulse oxymetry is 95-100. Newborns are checked in New Jersey before they leave the hospitals so mom's and dad’s should ask for results,” Hardy said. “Another important fact for other states is it costs less than the cost of a diaper change in the hospital.”

According to an NJSpotlight article, the test ranges from $5 to $15.

CHD occurs in every one in 100 births, Hardy said. Approximately 40,000 babies are born in the United States each year with a congenital heart defect, according to 1in100.org. More than 4,000 will not reach their first birthday while thousands more die before adulthood.

“Infants with CHD have abnormal structure to their heart which creates abnormal blood flow patterns. Critical CHD can bring a significant risk of morbidity or death if not diagnosed soon after birth,” she said.

Failure to detect the disease can lead to cardiogenic shock or death, she said. Those survivors with a late diagnosis are at a greater risk for neurological damage and developmental delays.

CHD causes more deaths in the first year of life than any other birth defect, according to the U.S. National Library of Medicine. Zoey has made it through her first year.

Pulse oxymetry testing only detects 75 percent of all CHD’s. But the following signs and symptoms can be seen in newborns:

1. Shortness of Breath or Rapid Breathing. A newborn breathes between 30 to 60 breaths per minute. Anything more or less is abnormal.
2. Blue Lips or Cynanosis. Some heart defects lead to a mixing of blue oxygen deprived from veins and red, which is oxygen rich blood from the lungs, producing a bluish color in the lips.
3. Difficulty Breathing. Nasal flaring or struggling to breathe is a sign as well as abnormal retractions of the chest and or abdomen.
4. Lethargy. Babies with CHD tire easily or sleep more than usual for a newborn.
5. Trouble Feeding. An infant whom you have to wake to feed, tires easily after feeding or takes a few sucks stops to catch their breath could have CHD.

“It’s not just ne particular sign. It’s all in conjunction with each other,” Hardy said.

Despite that Zoey will be having open hear surgery today, she is doing “great,” Hardy said.

Today, Zoey will have the holes in her heart sutured, she’ll be connected to a heart and lung bypass machine that will act as her heart during the surgery and an organ donor’s tissue will be used to patch up a band on her heart.

“We have setbacks. She has her moments. All CHD babies end up with neurological damage and delays. They’re not the healthiest. A lot of people think with the surgeries she’ll be fixed. They’re never truly fixed,” Hardy said.

Zoey will have to follow up with a cardiologist for the rest of her life and will always be classified with CHD, she said.

“Awareness is key. Knowledge is power. If I would have known this, things could have been different for Zoey,” Hardy said. "I want all expectant moms and new mommies to be aware and I feel that no one should have to suffer like Zoey did."

For more information on CHD and screening, visit http://savebabies.org/ and http://1in100.org/. Jersey Shore University Medical Center has a Congenital Heart Disease program.