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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And Relax… (Project 366 – Day 28)

  
My big boy has gone off to sleep at his nannie’s, so I took the opportunity to get a manicure (the pincer nails had to go) with just the baby in tow (luckily he slept for most of the time) and then once he was in bed for the night I got cosy in my bed with Russell’s book. 

The inspiration for both the manicure and the reading of a non-children’s book came from my absolute favourite blogger, Cash Carraway (The Comeback Mum) who posted her fancy nails and book of choice on Instagram and made me all envious. If you haven’t already, please check out her blog. It’s everything I want from a blog – honest, funny, sad, beautifully written and with some great beauty recommendations chucked in to boot. 

Anyway, I’m so pleased with my nails and my brain feels more alive from just having spent a little bit of time reading something for me. I love my kids with all my heart but I’m so glad of some relaxation time when I manage to get it. 

The Baby Won’t Sleep! (Project 366 – Day 26)

  
Zaki. Does. Not. Sleep. Honestly, he hardly ever sleeps. I’ve never heard of a baby like it. This photo was taken at 10pm and he was showing no signs of going off to the land of nod anytime soon. I finally got him to sleep at 11.30pm but he was awake again at 2am for 2 hours. 

In the daytime he barely naps, in fact he naps less than his 2 year old brother! I’ve tried to make him nap more because I’ve heard that ‘the more they sleep, the more they sleep’, but it didn’t work. I’ve tried to make him last the day with no sleep at all and that didn’t work either. 

He’s never grumpy from being over-tired, never cries because he wants to go to sleep. If I didn’t rock him for an hour and force him to drift off I don’t think he’d ever actually sleep! 

Has anyone else had a baby like this? Was there any reason behind it? I just don’t understand it. Sleep is the best, sleep is my favourite, why won’t he sleep?!

The Beach with a Toddler (Project 366 Day 25)

  
I blame Instagram for this whole sorry ordeal. I see amazing photos on there every day of families having lovely times in various lovely places with their lovely children. All so happy. All so calm. Ha ha ha, how they all laugh and frolick! Such fun!

Cut to me bundling the kids into the car, wellies packed, picnic sorted, we’re going to the beach, we’re going to have a nice time. Such fun!

Although it was January, the weather was very mild and the tide was out. Perfect. Omar could burn off some energy running on the sand, eat his picnic and then get home exhausted enough to want an early night. 

I managed to get him and the pram onto the sand then let go of his hand and let him run. Here’s what went down. 

    
    
   
Basically, he gravitated towards a huge pool of water under the pier and more or less had a swim whilst simultaneously whinging because it was freezing and manky. I then had to wade in and drag him out because despite the whinging he refused to get up. 

   
    
 

Obviously feeling he wasn’t in quite enough of a mess he then rolled around in the sand to ensure his soaking clothes were also caked in the stuff. Again, he refused to get up so I had to wrestle him and the pram to the car. 

We got home and I was the only exhausted one. Instagram lies. 

When it’s Selfish for Mothers to go Back to Work

Being a stay at home mum was never part of my plan. I spent a lot of time, energy and money becoming a qualified solicitor. I had grand plans. I’d be a city girl, a high flyer wearing designer threads as I slayed my opponents in court before marching out in my Jimmy Choos. (Look, I am a socialist but I like nice stuff too, ok?)

Look at this lady having a lovely time at work.

Anyway, the plan started to go a bit wrong when I moved from a city to my small home town and cut my legal teeth at a high street firm here. What followed was marriage and a baby. And then another. 

And now I’m a stay at home mum. Not a Jimmy Choo in sight. (What’s the point? They’d only get covered in crayon and milk spit up.)

Going back to work (as in paid work – we all know raising kids is still actual work) is something I think about a lot. I suppose I’ve never really gotten comfortable with being defined as only a mother. Yes, that’s my most important job, raising humans is a big deal and a lot of responsibility. Not just to them but to the world (I don’t want to rear psychopaths then let them loose to wreak havoc on civilisation one day,  obviously). But to let it be my only job doesn’t sit well with me. I suppose I feel the need to have something just for myself, if that makes any kind of sense. 

Please don’t mistake this for me having no respect for stay at home mums (and dads for that matter) and their decision to stay at home out of choice. I get how important it is for some people and judge them in no way. Some stay at home mum’s thrive but I’m not one of them; I’m crap at baking and I don’t have a crafty bone in my body. 

So I’ve explored going back to work. I’ve looked into the childcare options. I’ve worked out pick up and drop off times. And here’s the thing; no one would benefit from it except for me. 

If I worked locally I would have to drop the kids off at childcare at 8am and collect them at 6pm (maybe 5.30pm at a push). So that’s ten hours a day they would be in someone else’s charge. That’s the vast majority of their waking hours. After childcare it would be home, dinner, bed, bath – I’d barely see them. And that’s if I actually finished work when I was supposed to. Most lawyers take work home with them to finish as well, it’s the nature of the job. Yes, I’d have weekends, but that’s about it. 

The cost of 50 hours per week for childcare for two children would be around £460 per week. Despite popular opinion the average high street lawyer doesn’t make a huge amount of money, which means it would actually cost me financially to go back to work. If I worked part time, it would still cost me. 

The other option is if I worked out of town. The nearest two cities are just over  an hour’s commute away. Totally doable.  My salary would be a fair bit higher but I’d spend even less time with the kids. I’d may as well get a live in nanny. Which just makes me think, why did I have them in the first place if I’m going to let other people raise them? And as well as the live in nanny I’d doubtless need a cleaner, otherwise I’d be spending those precious weekends cleaning and ironing and what not. 

So to go back to work it seems I would have to either make my family generally poorer or outsource most other parts of my life (and possibly still make us poorer). And as the only person who would benefit from me working is me, I really can’t justify it. It would just be selfish. 

I chose to have my children, a decision I’ve never for a second regretted, so if that means I’m a stay at home mum for a while then so be it. The Jimmy Choos will just have to wait. 

Strange Day (Project 366 – Day 22)

Strange old day today consisting of a funeral and a kid’s party. Pain and sorrow from weary souls, followed by absolute delight and excitement from fresh, innocent tots. 

Here’s a photo from the latter portion of the day:

 
It pains me to think that a day will come when he will know pain and sorrow. I mean he thinks he knows it now (for example when I confiscate his football because he’s launched it at his brother for the sixth time that morning)  but I hope any real heartache is years and years and years away, if it ever has to come at all.