Around eight to 10 in every 1 000 babies is born with a heart defect and in South Africa, many of those go undetected. It's estimated that at least one in every four babies who dies of Sudden Infant Death Syndrome (SIDS) was an undetected CHD sufferer - but it doesn't have to be that way.
Cardiac surgeon Professor Robin Kinsley says advances in paediatric cardiology and cardiac surgery have made it possible for survival into adulthood for the majority of babies born with congenitally malformed hearts, but this is not the case on the African continent.
"Here, this is a dream as roughly 280,000 neonates born every year on the continent are left untreated, demonstrating the natural history of the congenitally malformed heart by default," he says. "This is due in part to lack of finances, lack of locally developed personnel and proper understanding of the problem."
Detecting CHDs is as simple as administering a test, called pulse oximetry, which measures how much oxygen is in a baby's blood, after the baby is 24-hours old. This dramatically increases the chances of survival, says Andrea Slater, the driving force behind The Hudson Initiative.
"This is the most important part of our focus. We're going to make sure that CHDs become as normal a scan as the Downs Syndrome check at 20 weeks. We're going to make sure that pulse oximetry tests are performed on all newborn babies. Moreover, we're going to make sure that the term CHD and congenital heart defect is no longer foreign or misunderstood.
"If mothers are armed with the information they need to protect their babies from CHD-related issues, these deaths could potentially be avoided. CHDs are scary but they're not the end. CHD babies live. They thrive. Post-surgery, hope is very much alive."
Ultimately, the initiative will realise the introduction of Hudson's Law, which will see pulse oximetry testing becoming compulsory. In the meantime, the initiative is raising money to fund CHD awareness campaigns and pay for pulse oximetry testing in infants. The long-term goal is to pay for surgeries needed by babies whose families who cannot afford them.
Interested parties can sign a petition and spread the word by visiting the website. They can also be part of the social media campaign using the #JustAsk hashtag, which prompts expectant mothers to do three things:
"Our journey with Hudson was a very real, very painful, very testing and an extraordinarily fulfilling one. We like to think he chose us because he knew we would do something to address the concerning statistics around the sheer number of babies who are sent home with undiagnosed CHDs. We're going to change things on behalf of the boy who changed our world."
The campaign is building momentum towards CHD Awareness Week in February 2014. For more information, go to www.hudsoninitiative.org, www.facebook/thehudsoninitiative, email gro.evitaitininosduh@ofni and Twitter on @THI_CHD.
