All4Baby » Sudden Infant Death Syndrome https://all4baby.co.za From Pregnancy to birth to baby and beyond. The place to find, chat, and share. Wed, 16 Jul 2014 05:12:10 +0000 en-US hourly 1 http://wordpress.org/?v=161 Congenital heart defects: What every mom and mom-to-be should know https://all4baby.co.za/newborns-0-6-months/birth-defects/454/congenital-heart-defects-every-mom-mom-know/?utm_source=rss&utm_medium=rss&utm_campaign=congenital-heart-defects-every-mom-mom-know https://all4baby.co.za/newborns-0-6-months/birth-defects/454/congenital-heart-defects-every-mom-mom-know/#comments Wed, 23 Apr 2014 09:04:37 +0000 https://all4baby.co.za/?p=454 CHDs are the number one birth defect and the top cause of birth defect related deaths worldwide. One in five infant deaths that are mistakenly identified as Sudden Infant Death Syndrome (SIDS) are actually CHD related.

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There are approximately 37 known CHDs and one in 100 children born are affected. That’s one child born with a heart defect every 15 minutes globally.

If you were to ask expectant mothers what a CHD is, not many would know the answer and this is because you only really become affected by these defects if you are lucky enough to have them identified early on.

CHD Facts

CHD deaths can be avoided through education and knowledge. If moms are armed with the information they need to protect their babies from CHD related issues, death could potentially be avoided. All moms need to do is ask.

  • Congenital Heart Defects are the number one birth defect worldwide.
  • Congenital Heart Defects are also the number one cause of birth defect related deaths worldwide.
  • Approximately one out of every 100 babies are born each year with some type of Congenital Heart Defect.
  • Each year 100,000 babies (under one year old) worldwide will not live to celebrate their first birthday.
  • The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year.
  • Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research.
  • Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood.
  • It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications.
  • More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
  • There are more than 37 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
  • 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 CHDs.

Meet Hudson

“Hudson was born on January 14th, 2013. Two days later, the hospital appointed paediatrician identified what he thought to be a heart murmur and immediately called the resident cardiologist to check it out. It turned out, Hudson had a congenital heart defect (CHD) called Truncus Arteriosus.

He underwent surgery at six weeks of age and everything looked so positive that we’d all but stopped worrying about his heart; so it was completely unexpected when he passed away in the early hours of the morning of May 17th.

In a sad way, we were lucky. Hudson’s CHD was identified early on and we could do everything possible to try and save him. While we weren’t successful and are struggling through the grief of losing our child, we believe that Hudson’s story can help to make a difference in saving the lives of future CHD kids”, says Hudson’s mom, Andrea Slater.

Ask your OB Gyn for information on CHD

There aren’t many OB Gyns who routinely perform the necessary scans for CHDs during pregnancy. Most scan routinely for Down’s Syndrome and various other genetic disorders, but the dangers that face unborn children go further than just these.

If heart related disorders are identified, expectant mothers can, for instance, opt for caesarean sections rather than natural birth, thereby relieving the stress on the infant’s heart and body.

Ask for a Pulse Oximetry (Pulse Ox) screen once your child is born

Pulse Ox is a simple screening test that measures how much oxygen is in a baby’s blood. When performed after the baby is 24 hours old (or before discharge), the test can help identify babies who may have serious heart problems before they go home.

Speak to 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. Talk to us, we can help you save a heart.

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.

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Babies shouldn’t die of a broken heart, says Hudson Initiative https://all4baby.co.za/birth/labour-delivery/405/babies-shouldnt-die-broken-heart-says-hudson-initiative/?utm_source=rss&utm_medium=rss&utm_campaign=babies-shouldnt-die-broken-heart-says-hudson-initiative https://all4baby.co.za/birth/labour-delivery/405/babies-shouldnt-die-broken-heart-says-hudson-initiative/#comments Tue, 22 Apr 2014 07:52:23 +0000 https://all4baby.co.za/?p=405 Around 1 in every 100 babies is born with a heart defect, and in South Africa, many of those go undetected.

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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

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