A simple newborn screening for life-threatening birth defects is something close to Margaret Bradford’s heart.
Bradford’s 7-month-old son, Gavin, underwent successful open-heart surgery this month at Akron Children’s Hospital to close a large hole.
Despite her son’s struggles, Bradford said, she knows other babies aren’t as fortunate.
His heart problem was discovered in utero months before his birth. The early diagnosis allowed doctors to plan for Gavin’s arrival and start medications and other medical interventions immediately.
But for some newborns, defects aren’t discovered until they suddenly turn blue after going home.
Now Bradford is using Gavin’s story and her growing following on social media to push for mandatory newborn screening for critical congenital heart defects in hospitals here and nationwide.
“We were lucky, but how many families aren’t?” she said. “It’s a big issue with little awareness.”
About one in every 100 babies born in the United States has a heart defect, according to the U.S. Centers for Disease Control and Prevention. About a quarter of those newborns have critical congenital heart defects that need immediate medical attention after birth.
Of the estimated 7,800 babies born in the United States each year with critical congenital heart defects, about 300 are sent home with unrecognized critical heart defects, leading to medical crises.
As fetal circulation ends in the hours or days after birth, babies with these serious defects can face life-threatening consequences, said Dr. Anand Kantak, Children’s Hospital’s director of neonatology. If the defect is discovered soon enough, doctors can intervene and keep the circulation going with medications until the defect is fixed.
These defects often can be detected with a noninvasive screening known as pulse oximetry, or pulse-ox testing.
The test involves placing sensors on the baby’s skin to determine the amount of oxygen in the baby’s blood and the baby’s pulse rate.
Sign of trouble
The screening won’t catch all heart defects. But low levels of oxygen in the blood can be a sign of critical congenital heart defects, which can be diagnosed with further testing.
“Something that needs to be addressed right away — within days or weeks of diagnosis — are the ones that get picked up,” Kantak said.
A U.S. Department of Health and Human Services’ committee recommended in 2010 that routine pulse-ox screening be used to screen newborns for certain critical heart defects. The American Academy of Pediatrics endorsed the recommendation.
Kantak estimates it costs $10 to $20 per baby for the pulse oximetry testing.
The Ohio Senate recently approved a measure (Senate Bill 4) that would require all newborns to be screened for serious heart defects before discharge. The proposal is pending in the Ohio House.
Several area hospitals — including Medina Hospital, Wooster Community Hospital and Aultman Hospital and Mercy Medical Center in Canton — already routinely screen newborns for heart defects.
One month after Aultman started the screening in January, it likely saved a life.
Brittany Fuller of Massillon was getting ready to take her first child, Jonathan, home from the hospital the day after he was born when the pulse oximetry testing showed his blood oxygen levels were low.
Instead of going home, he was rushed to Akron Children’s Hospital, where further testing revealed he had a complex congenital heart defect that will require several surgeries.
“The surgeon told us if we would have went home, he would have died in his crib,” Fuller said. “I truly support that every hospital should do a pulse-ox check on every baby.”
Akron Children’s Hospital is working with Akron General Medical Center and Summa Akron City Hospital to begin screening newborns for congenital heart defects, Kantak said.
Alliance Community Hospital also plans to start the screenings when the facility switches to a new charting system in June, a hospital spokeswoman said.
For Gavin, his heart defect, while large, isn’t considered one of the critical defects targeted by the pulse-ox testing.
But that’s not stopping his mother from trying to save other babies by pushing for the newborn screening.
The hole in Gavin’s heart — known as a ventricular septal defect — was discovered about halfway through his mother’s pregnancy during a fetal echocardiogram. The testing was performed because his older brother, Xavier, 2, has a smaller hole in his heart that hasn’t required medical care.
During one of Gavin’s hospital stays after his birth in October, Bradford started a Facebook page to keep family and friends informed. By the next morning, the page had more than 1,000 followers.
Bradford decided to use the page as a forum for raising awareness about congenital heart defects and newborn screenings. With followers sharing her posts, her messages have been spread to as many as 250,000 Facebook users.
“They’re young. They don’t have a voice yet,” she said. “Somebody has to take over and be that voice.”
She even dyed her hair fire-engine red to bring attention to the cause. She plans to go to Columbus today to testify in favor of the newborn screening proposal.
Last week, Drs. Philip Smith and Michael Spector, cardiothoracic surgeons at Children’s Hospital, repaired the large, complex hole in Gavin’s heart using a patch.
He’s recovering at the family’s home in Barberton after a week in the hospital.
Doctors think he’ll be able to start eating on his own instead of relying on a feeding tube now that his defect is fixed. Babies with large holes in their heart often struggle to eat because their overworked hearts use all their energy just to keep pumping.
By sharing Gavin’s story, his mother said, she’s hopeful others will be inspired to get involved with congenital heart defect awareness initiatives.
“We’re fighting different battles,” she said, “but our prayers are all the same.”
Cheryl Powell can be reached at 330-996-3902 or firstname.lastname@example.org. Follow Powell on Twitter at twitter.com/abjcherylpowell.