Saving New Jersey’s Littlest Hearts
Garden State parents: mandatory simple heart test to save babies
Former Hoboken resident Rachel Goldberg recently had a scare with her new baby Talia. She was born with multiple heart defects – and a very popular area hospital failed to administer a simple $10 test that not only would have prevented problems on her end – but can save many infants that die each year because Critical Congenital Heart Defects (CCHD) go undetected.
She’s concerned that after lobbying local politicians (like our very own Ruben Ramos), and successfully getting a proposed bill through the state Assembly and Senate – Governor Chris Christie has done nothing about it.
Read below to see her letter – and if you’d like to send a letter to support this cause – you can do so almost automatically with this Save New Jersey’s Littlest Hearts online letter campaign. Just a few clicks and your letter is on it’s way!
New Jersey families ask Governor Christie to save “little hearts”
Parents from across New Jersey are joining together to implore Governor Christie to put his signature on what would be the nation’s first state legislation to mandate pulse oximetry, Bill A-3744/S-2752. Pulse oximetry, or “pulse ox,” is a non-invasive, low cost test that can help detect critical Congenital Heart Defects (CHDs) in newborns prior to discharge.
CHDs are the most common birth defect in newborns and affect about 1 out of every 100 babies. In fact, CHD is the number one cause of birth defect related deaths in the United States. Failing to detect critical CHD prior to discharge can lead to life-threatening events including cardiogenic shock, organ failure, and death, as too many parents know all too well.
Approximately 1-in-100 children are born with a congenital heart defect (CHD). Some are detected during prenatal ultrasounds; some immediately after birth; and many well after a child has been released from the hospital. For children born with undetected CCHDs, hospital discharge can be deadly, as many families know all too well.
“No parent should have to hear a doctor say their child might die because they were released from a hospital that did not choose to perform this simple, $10 test,” says Rachel Goldberg, a mother from South Orange, NJ. Goldberg’s daughter was born with undetected CHDs, and her battle to advocate for mandatory pulse ox testing is personal. “At four days old, my daughter’s legs began to turn blue. Two hospitals struggled to stabilize her, before she was transferred to a third hospital to face surgery. My husband and I were told that she might not make it, and to prepare for the worst.”
Had Goldberg’s doctor performed the test prior to discharge, they believe the baby would have been diagnosed and stabilized, minimizing the risk of cardiac arrest, organ failure, and developmental delays caused by a lack of oxygen.
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Kim Shadek, President of the CHD Coalition in New Jersey and resident of Kinnelon, is encouraging parents to reach out to Governor Christie. After multiple sonograms and in-depth fetal echocardiograms, Shadek’s son was considered a healthy baby, until he began suffering respiratory distress while feeding. When Shadek questioned a nurse about her son’s rapid breathing, the nurse rushed him to the NICU, where he was diagnosed with critical CHDs. “We know the test can save lives, so why don’t we require it?” asks Shadek, “How can we mandate a hearing test and not a heart test?” Her organization works with parents from across the state, raising funds for research and providing support systems for parents of children born with CHDs. “There is no greater sadness than a parent that has lost a child. The sooner this bill is signed, the sooner we can begin to save lives.”
This week, families from across New Jersey are joining together to ask Governor Christie to put his signature on the nation’s first pulse ox legislation. Sponsored by Assemblyman Jason O’Donnell, the NJ Pulse Ox Bill will require newborns to receive the pulse-ox test at least 24 hours after birth. “A simple test can save the lives of many infants, and save their families from unimaginable heartache,” notes O’Donnell, whose third son was diagnosed with CHD in the hospital and underwent open heart surgery. Goldberg hopes the letter writing and email campaign will encourage Governor Christie to put saving the tiniest hearts at the top of his agenda