All4Baby » Congenital Heart Defects https://all4baby.co.za From Pregnancy to birth to baby and beyond. The place to find, chat, and share. Tue, 15 Jul 2014 14:19:53 +0000 en-US hourly 1 http://wordpress.org/?v=161 What to expect from your 20 week scan https://all4baby.co.za/birth/labour-delivery/1275/expect-20-week-scan/?utm_source=rss&utm_medium=rss&utm_campaign=expect-20-week-scan https://all4baby.co.za/birth/labour-delivery/1275/expect-20-week-scan/#comments Wed, 09 Jul 2014 09:17:10 +0000 https://all4baby.co.za/?p=1275 Your mid-pregnancy (20 week) scan is the most important, as it is this scan that can detect the presence of a Congenital Heart Defect in your unborn baby.

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The mid-pregnancy scan can (and should) seem like a natural part of the process in any pregnancy – between 17 and 21 weeks, your OBGYN will either conduct the scan himself or send you off to a sonographer who will perform an in-depth scan of your baby.

To a mom wary of Congenital Heart Defects (CHDs), this is the scan – the results of which will leave them filled with relief or fear because it is also the scan that shows the presence or lack thereof of a CHD.

This scan highlights potential defects in the foetus. It’s also the most important scan as it gives you the time you’ll need to prepare for life with a defect.

Checking for anomalies in your unborn baby

Sometimes referred to as the “anomaly” scan, it is exactly that – a check for anomalies in your unborn baby.

The sonographer will examine your baby’s organs and take measurements. He or she will look at;

  • The shape or structure of the baby’s head
  • The baby’s face (to check for a cleft lip)
  • The spine to check that the bones align
  • That the skin covers the spine at the back
  • The abdominal wall to make sure that all the internal organs are covered; and
  • The stomach, kidneys, arms, legs, feet and hands which will also be checked for defects here.

Checking your baby’s heart

It is during this scan that your baby’s heart will be checked. Your OBGYN will ensure that the top two chambers (atria) and bottom two chambers (ventricles) are the same size. He or she will also make sure that the valves open and close with each beat of the heart and that the major veins and arteries carrying blood to and from the heart are in good shape.

Asking the right questions

As part of our awareness efforts, we ask expectant parents to make sure they ask five very important questions during this scan:

  1. Is the heart rate normal?
  2. Is the heart function normal?
  3. Do you see four chambers in the baby’s heart?
  4. Are the heart and stomach in the right position?
  5. Do you look at arteries as part of your anomaly scan?

For the moms who want to delve a bit deeper, you are also fully within your rights to ask:

  1. Are there two upper chambers (left and right atria), each with a valve controlling blood flow out of them?
  2. Are there two lower chambers (left and right ventricles), each with a valve controlling blood flow out of them?
  3. Do the vessels of the heart (aorta and pulmonary artery) cross each other as they exit?
  4. Is the wall between the two lower chambers intact, without any holes?
  5. Does everything in the heart look normal?

Some heart conditions (and bowel obstructions) might not be seen until later in the pregnancy or even after the child is born (which is why asking for a pulse oximetry test to be performed on your baby before taking him home is so vital) but having a thorough scan at this point can rule out these conditions and put your mind at ease.

What if the news from this scan is bad?

If a problem is found or suspected, you will be told immediately and will probably be advised to set up a more thorough exam with an actual cardiologist. Here, what is called a foetal echo scan dives a bit deeper (so to speak) for a more thorough look at the heart.

Detection leads to preparation

Why is this scan important? The answer is simple – knowledge is power.

Detecting a potential CHD before birth allows for planning. Planning for the rest of the pregnancy; planning for a safer delivery; and planning for the necessary teams to be prepped and ready to go following the birth of the baby.

Natural birth, for example, might be too traumatic for a CHD baby and planning for a Caesarean could be an option to ease the path.

Some babies are “born blue”, which means they would need immediate attention and knowing that this is a possibility would mean parents and their birthing teams can prepare to have the right skills ready and waiting.

1 in 100 babies

Any pregnancy should be a special time for moms but the reality is that 1 in every 100 babies born will have a CHD.

Many of these are minor, some even fix themselves and most of those that don’t, can be corrected through surgery – but asking the right questions during the 20 week scan and then demanding a pulse-ox before you take your baby home can make sure these pregnancies have the happy endings that they deserve.

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 or visit www.hudsoninitiative.org and www.facebook.com/thehudsoninitiative

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A mom’s heartfelt eulogy to her four month old son https://all4baby.co.za/newborns-0-6-months/birth-defects/429/moms-heartfelt-eulogy-four-month-old-son/?utm_source=rss&utm_medium=rss&utm_campaign=moms-heartfelt-eulogy-four-month-old-son https://all4baby.co.za/newborns-0-6-months/birth-defects/429/moms-heartfelt-eulogy-four-month-old-son/#comments Thu, 15 May 2014 07:13:42 +0000 https://all4baby.co.za/?p=429 It’s two weeks today since I last held my son. I have no real learnings for you. I couldn’t write a book on anyone’s grief but my own. I can tell you it still feels surreal.

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I still wake up wondering why he’s so quiet. I still feel the universe was un-forgivingly unfair on both Hudson and us. And I still miss holding him close to my chest. I can also tell you that we haven’t touched his things, except to smell them and rub them against our faces. We haven’t even discarded the milk we’d prepared so diligently the night before he died.

It’s hard. I can go all day feeling drier than the Sahara and then I feel the longing and the emptiness in our home or I look at one of his photos, remember the time I took it and the flood of tears comes.

The only thing that doesn’t go away, even momentarily, is the pain. It’s physical and real and on-going. Unending.

I won’t write much more today. It feels disloyal to his memory still. Everything feels disloyal to his memory. Eating without interruption. Watching a TV show in its entirety. Taking a walk outside without his baby monitor. The guilt is all consuming.

We’re alive and he’s not.

However, I did promise a few mothers that I’d share my eulogy with them and it was the only thing I wanted to get right on the day we bid him a public farewell, so here it is…

“I sat alone this morning, the day before we sent your body away, and listened for you. I tried as hard as I could to see you. And in the quiet noise that is nature, I felt my own heart skip a beat as it has done several times a week since you were born…

I drew in a sharp breath and remembered… That this is where you live now.

I’ve woken up before the sun every day since Friday. My intentions always become very clear to anyone paying attention. I would hate the sun. I would hate it with every ounce of my being because it refuses to mourn. Because every time the sun comes up it means another day I have to live without my son.

Every day I’ve begged whoever is in charge to take me back, just to last week Wednesday or Thursday so I could stop it. But, most hatefully, it will not be.

Every day, I’ve asked that I be taken instead and every day ends and I’m still here.

Every day, I’ve blamed myself for letting my beautiful son die.

Every day I get up from the couch where I sleep, I go into the room where he woke us at 01h30 on Friday morning to make sure we were there for him when his little heart gave up and I weep as I realise anew that nothing we did changed anything.

Every day I rise and I am as cold to my bones as his soft skin was the last time I kissed his face and all I want to be is as cold as the Winter that has truly arrived since the day he died.

But, no matter how hard I try to hate everything in this world, it doesn’t last.

I realise the sun is actually Hudson. I realise that he will not allow me to hate for much longer. I know that he will turn my anger into calm. My grief into smiles as I remember him. I know this is a long journey and I won’t be the person he needs me to be today but I also know as the sun hits my shoulders that he will be there to comfort me  until I can be the person he knows me to be.

He mourned with me on Saturday and Sunday and the sun was hidden behind a blanket of miserable grey clouds and rain (as my friend Axel posted in a private message to me: “The heavens themselves blaze forth the death of princes.”) but now Hudson warms me. He reminds me that he’s here still.

That everything he went through in his life was mapped out long before he entered my body and became a part of me that would never leave. That he chose his path. He chose Nick and I. He chose his faulty heart. He chose the difficult and trying life that he lived and he chose his death.

Before Hudson, I realise now, I was a shell of a person. I would say I was selfish and wanted what I wanted in life and had no room for the bigness of children. But it was a lie. I was just empty and didn’t know any better.

I was walking along looking for somebody and then suddenly I wasn’t anymore. He forced his way into my life and, in doing so, saved me from myself. I fell truly in love for the first time in my life. Hudson turned me into something. He turned me into love. He filled me. He completed me. He made me count.

You are all here because you knew Hudson in one way or another. So I’m not going to go into the surgery and hospital stays and rubbish doctors or even tell you the funny stories of the nurses who poked fun at his fake crying. You’ve all followed his journey through pictures and updates, you’ve all fallen in love with him vicariously because, even from a distance, it was simply impossible not to adore this kid.

What you might not know though is that no matter how hard things got. No matter how many times I thought I couldn’t put my son through another day in the hospital. No matter how the guilt swelled up inside me as I watched them poking his skin in search of veins. There was never a day in his life that my son didn’t smile broadly and “gummily” at his dad and me. That he didn’t stare deeply into my eyes with eyes as big as his face – eyes that enveloped me entirely with one glance and showed, with such beautiful honesty, his instant and surging love for his mom. Eyes that told me exactly what he needed at any given point of the day.

He was happy and giddy and shy and full to the brim with love. He was a personality and proud of it. He had a sense of humour and a physical wit that would put me to shame. He held his head up high almost from birth. He spoke his first word. He laughed as his father and I touched his little tummy.

Even his last day with us was one filled with gums and fistfuls of grabbed hair as he hugged me tightly and snuggled his little face tiredly into my neck.

But one of the most important things I’ll remember about my son was his impact. When he was born, I said he was going to be famous. When we found out he’d have to undergo surgery, I said he was going to be big and important. I told him he had no choice but to make it through and that I was expecting nothing but success. And he was and still is all of these things.

Because of Hudson, people are hugging their children a little tighter at night.

Because of Hudson, one mother might ask her doctor to perform the check on her unborn son for CHDs and, in doing so, save her child.

Because of Hudson, Nick is a father, the proudest, most attentive, doting father I have ever known or could ever have hoped for.

And, because of Hudson, and only because of Hudson, I am now a person of substance. I am Hudson’s mother, and this is always going to be bigger than anything I ever wanted to be.”

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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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