Babies shouldn’t die of a broken heart, says Hudson Initiative

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). In September 2013, his devastated parents launched an ambitious campaign – The Hudson Initiative – to make South Africans more aware of CHDs, and to introduce compulsory testing for newborns.

1 in 100 babies

Around 1 in every 100 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 five 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.”

The statistics get scarier when you hear that globally, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

Creating awareness

The Hudson Initiative faces a long, arduous road – one that is starting with awareness, will encompass a growth in research funding and the collection of funds to help families who cannot afford the surgeries needed to help their babies, and will end in the creation of Hudson’s Law.

To explain the end goal, 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 screening for heart defects 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 before they are sent home. And we’re going to make sure that the terms CHD and congenital heart defect is no longer foreign or misunderstood,” says Slater.

“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.”

Pulse Oximetry

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.

#JustAsk

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 OB Gyn for information on CHDs. Speak to your OB about the foetal echocardiogram during your 20 week scan.
• Ask for a Pulse Oximetry (PulseOx) screen before you take your child home.
• Ask other humans who know. Join pages like The Hudson Initiative on Facebook, where we bring focus to CHDs, what’s being done about them in South Africa, what mothers can do to protect their kids going forward and raise funds to help raise awareness around CHDs.

“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.”

About the Author: Andrea Slater is mother to a CHD angel and all she wants is to help other tiny people get a fighting chance in this life. Readers are welcome to visit her blog for more on Hudson’s journey. For more information visit www.hudsoninitiative.org

• About
• Latest Posts

Contributor

Latest posts by Contributor (see all)

• Pregnancy: The awesome and the awkward - September 1, 2014
• Study: Baby babbling could be beneficial - September 1, 2014
• The benefits of swaddling your newborn baby - September 1, 2014