Congenital Heart Defects – Be Aware, Be Prepared


February is Congenital Heart Defect Awareness month. You might have read my post about my baby, Zaki and his broken heart and how his life was saved by some amazing cardiologists, surgeons, consultants and nurses. Our outcome was a happy one but we all would’ve found it so much easier to cope if we’d been aware and been prepared.

Before Zaki was born I knew absolutely nothing about congenital heart defects and assumed that if there was anything wrong with my baby’s heart it would have been picked up at my 20 week anomaly scan. Wrong. Only 50% of the type of defect Zaki had are spotted during the anomaly scan. When I was told about the diagnosis I wish I’d known more about it; instead I felt confused and helpless. I’m passionate about raising awareness wherever I can now, so here are some helpful facts about congenital heart defects:

  • Congenital heart defects are problems that have occurred with the structure of the heart as it was formed (‘the plumbing’)
  • There are 18 recognised main congenital heart defects, with variations of each one
  • 1% of babies will be born with a congenital heart defect and it is the most common defect in newborns
  • That’s 12 babies a day in the UK that are affected
  • Out of those 12 babies, 4 will have been diagnosed pre-natally, 4 will be diagnosed shortly after birth and 4 will go home undiagnosed until they fall ill or die
  • The heart is formed within the first 6 weeks of a foetus’ life and the defect has probably occurred before the mother even knows she is pregnant
  • Congenital heart defects kill twice as many children as all childhood cancers combined

 

Scary stuff isn’t it? But it isn’t all bad news. With early intervention 90% of babies born with a congenital heart defect go on to live happy, long lives.

 

My baby after his open heart surgery, just days old

 

My baby at 6 months old
There really isn’t anything a mother can do to prevent her baby being born with a congenital heart defect but there are steps that can be taken to make sure it’s picked up as soon as possible.

At the 20 week anomaly scan the following questions can be asked of the sonographer:

  1. Can you see the 4 chambers of the heart?
  2. Are there 2 upper chambers and are they controlling the blood flowing out of them with valves?
  3. Are there 2 lower chambers and are they controlling blood flowing out of them with valves?
  4. Do the two great arteries (aorta and pulmonary artery) cross over each other as they exit the heart?
  5. Are there any holes in the wall between the two lower chambers?
  6. Can you see any abnormalities at all with the heart?


If you are pregnant, write those questions down, take them with you and ask. It’s worth it. The sonographer might not be able to answer all of those questions and might put it down to the position of the baby. If that happens offer to go for a walk and come back in 10 minutes. You might sound like a pushy mother-to-be but who cares? It might just save your baby’s life. I so wish I had asked those questions. Knowing about a congenital heart defect prior to the birth increases the baby’s chances of survival and also means the parents can mentally (and practically) prepare themselves for what’s to come.

There’s an amazing charity called Tiny Tickers who do great work in funding training for sonographers so that more CHD’s will be spotted at the anomaly scan. You can order a card free of charge from the Tiny Tickers website here which you and the sonographer can go through together at your scan if you’d prefer to do that rather than ask the questions above.

If a congenital heart defect isn’t picked up at the 20 week anomaly scan there are signs and symptoms that might become apparent once the baby is born:

  • Rapid breathing
  • Rapid heartbeat
  • Cyanosis (skin looks blue, especially hands and feet)
  • No interest in feeding
  • Fatigue (baby will not wake)

 

Zaki was too tired to feed, which prompted a doctor to checks his sats.

If you have any concerns AT ALL please insist that a pulse oximetry test is carried out on your baby. It’s a really quick, non invasive test that involves a sensor being placed on a finger or toe. The oxygen saturation levels (sats) in the blood can be measured that way and if they are lower than expected, that suggests a problem with heart function and further tests can then be carried out to establish exactly what’s going on.

Don’t be embarrassed/shy/too polite to ask for that test to be carried out if you are genuinely worried that your newborn isn’t behaving as he or she should. That simple sats test saved my baby’s life. (For the first time, his life was about to get saved several times over the following weeks but that’s another story.) Don’t sit there quietly panicking, just explain your worries and ask for the test.

If you go home with your baby and later notice something isn’t quite right go to a&e. Heart defects are time critical and every second matters. Don’t worry that you are being over-cautious, just get your baby checked out. Your instinct might save their life.

Of course 99% of babies do not have a congenital heart defect so please do not let this post worry you sick. The chances are that your baby will be absolutely fine. But it doesn’t hurt to be prepared. Something that I definitely wasn’t when I was told there was something wrong with my baby’s heart a few hours after I had given birth.

If you find yourself in the position that I was in try to take comfort in the fact that the cardiologists and surgeons will do absolutely everything possible to save your baby and above all else, stay strong.

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2 thoughts on “Congenital Heart Defects – Be Aware, Be Prepared

  1. Smashing post. Really informative and conscientious, without scaremongering.

    I’m heartbroken by those pictures of your little man with all those wires and tubes after such a major operation – what an ordeal for you all.

    Over the moon it had a happy ending.
    I had no idea about any of these things you’ve mentioned either, it was never spoken about, so I’ll share on for others to read too.

    He’s a gorgeous little dude. You should be very proud…even if he does keep you up all night 😉😂
    X

    Liked by 1 person

    1. Thank you so much for your kind comments. It’s really hard to get the right balance between spreading awareness and frightening the life out of people.
      I honestly wish I’d known more about CHDs when I was first told Zaki had one though and that’s my motivation for trying to tell others.
      I appreciate you sharing it so much 😘😘 xx

      Like

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