BABY Hudson Turkish Slater-Smith was only four months old when he died of a broken heart. Or, to be more accurate, a congenital heart defect (CHD). Now his devastated parents have launched an ambitious campaign – The Hudson Initiative – to make South Africans more aware of CHDs and to introduce compulsory testing for newborns.
About eight to 10 in every 1 000 babies – nearly one in 100 – 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 point 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 their 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.
“And we’re going to make sure that the term CHD and congenital heart defect is no longer foreign or misunderstood,” Slater says.
“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 hope is that the initiative will realise the introduction of Hudson’s Law, which will see Pulse Oximetry testing becoming compulsory. In the meantime, it 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 cannot afford them.
Interested parties can sign a petition and spread the word by visiting www.hudsoninitiative.org.
They can also be part of the social media campaign using the #JustAsk hashtag, which prompts expectant mothers to do three things:
- Ask your obstetrician for information on CHDs. Speak to them about the foetal echocardiogram.
- Ask for a Pulse Oximetry (PulseOx) screen once your child is born.
- Ask other people who know. Join pages like The Hudson Initiative on Facebook, which brings focus to CHDs, what’s being done about them in South Africa, what mothers can do to protect their kids going forward, and raises funds to help create awareness about CHDs.
“Our journey with Hudson was a very real, very painful, very testing and an extraordinarily fulfilling one,” Slater said.
“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.”
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