Monday, 19 October 2015

Two Important Ways to Give Your Baby's Heart a Better Start




Baby Loss Awareness Week took place last week. On Thursday at 7pm, thousands of people across the globe lit candles in memory of the babies they have lost.



The 15th October is recognised worldwide as Pregnancy and Infant Loss Remembrance Day. My husband and I added our candle to the global wave of light, remembering our baby girl Grace who we lost to a congenital heart defect.

Last week was about commemorating those who were taken too soon. This week, I’d like to talk about the steps we can take to prevent some of those deaths. Specifically, how we can prevent deaths caused by one of the most common birth defects – congenital heart defects (CHD).
Heart defects affect 1 out of every 125 babies, making them the most common cause of birth defect related deaths in the UK. Shockingly, only 1 in 3 babies affected by CHD have their condition detected during pregnancy.



Early detection of CHD saves lives. That’s an undeniable fact. However, at present, the 2 out of 3 babies whose heart defects are not detected during pregnancy have to take their chances.
I am very proud to volunteer for a wonderful charity called Tiny Tickers, which aims is to improve the detection of CHD during pregnancy and give heart babies a better start in life. Tiny Tickers’ mission is entirely achievable and their methods work.

At present, Tiny Tickers are training sonographers to be better equipped to spot heart defects at the 20 week scan. Statistics show that the training works – in the regions where it has already been carried out there are significantly higher detection rates of CHD. Tiny Tickers is a small charity with huge ambitions – to train sonographers all over the UK so that every baby with CHD has the best start in life. But they are not quite there – yet.

With this in mind, there are two very important steps you can take to ensure that, if your baby does have CHD, it is detected and treated as soon as possible:

    Give Your 20 Week Scan the Big Tick:

Tiny Tickers have created a Big Tick card, which you can take along with you to your 20 week scan. It contains questions you can ask your sonographer to enable you to confidently discuss your baby’s heart health together. The Big Tick Card is completely free and can be ordered from visiting the Big Tick website here . It only takes a few seconds to order and doing so means that you will be well prepared with the questions you need to ask about how your baby’s heart is developing.



In the vast majority of cases, babies’ hearts are perfectly healthy. But if there is a problem, spotting it at the 20 week scan will give him or her the support and medical care they need straight away. This means a better chance of survival.

        Think Heart:

During my time as a volunteer with Tiny Tickers, I have heard many stories from new parents whose instinct told them that something was seriously wrong with their baby but who were dismissed by health professionals. For example, Grace Brown had voiced her concerns over daughter Honey’s health many times before her heart problem was finally picked up. By the time Honey arrived at hospital she had already gone into heart failure. Luckily, her story has a happy ending (you can read it here).

Part of Tiny Tickers’ work includes spreading a very important awareness message called Think Heart. If a baby is not thriving and does not seem to have an infection, jaundice or any other common cause, parents should ask a health professional to check the following 5 signs of a heart problem:



For more information on recognising the signs of CHD, please visit the Think Heart web page.



My daughter, Grace, had a heart defect called Ebstein’s Anomaly, which was detected at my 20 week scan. In most cases, early detection of CHD gives babies a better chance of survival. Unfortunately Grace’s heart defect was so serious that, even with the most expert medical care, she didn’t make it. But, early detection meant that she received the best treatment available. At least when I look back now, I know that everything possible was done for her. 

Without the eagle-eye of the sonographer at my 20 week scan, it is highly likely that we would never have met Grace alive. She would almost certainly have been stillborn if my pregnancy had continued unassisted. Instead, we had a precious few hours with her before she passed away. Those memories mean the world to us.

Tiny Tickers receives no government funding and is entirely reliant on the generous help of supporters to carry on with their life saving work. Regular gifts from their Heart Champions allow them to plan for the future and train more sonographers.

£5 SENDS A NEW DIAGNOSIS PACK WITH SUPPORT AND INFORMATION TO TWO FAMILIES WHO HAVE JUST FOUND OUT THEIR BABY HAS A HEART DEFECT.
£10 A MONTH TO TRAIN ONE SONOGRAPHER ANNUALLY WHO WILL BE BETTER ABLE TO DETECT CHD IN THE 300 SCANS THEY CONDUCT EVERY YEAR.

£25 CAN SEND VITAL DETECTION INFORMATION TO 40 BABY CLINICS AND GP SURGERIES TO RAISE AWARENESS OF CHD AND THE IMPORTANCE OF EARLY DETECTION.

1 in 3 babies with CHD are discharged from hospital with no one knowing about their life-threatening conditions. Tiny Tickers needs as much help as possible to change this frightening statistic.



If you would like to become a Heart Champion and help Tiny Tickers continue their vital work assisting heart babies before birth, please click here to find out more.
Please remember these two positive actions you can take to be aware of your baby’s heart health. By sharing these tips with as many fellow parents as possible and assisting Tiny Tickers to achieve their aims, we can all play our part in giving heart babies the best start in life.


Written by Aimee Foster, 12th October 2015

32 comments:

  1. My heart goes out to you for your loss but thank you for writing this post and raising awareness of practical things that parents can actually do to help themselves in a situation that could feel helpless. The Big Tick card is a great idea.

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    1. She is such a strong woman and I think the big tick card is wonderful, I would never thought to ask questions at my 20 week scan x

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  2. I'm so sorry for your loss (Grace), life can be so cruel, why do these things happen? I admire your strength in writing this post after what you have been through, but must thank you for sharing. Take care.

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  3. Such a good cause to support. Sorry to hear about Grace Aimee.

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    1. They are wonderful cause, such amazing work they do

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  4. I'm so sorry for your loss.

    You are doing amazing work volunteering for this group and spreading the word. I have a friend due her 20 week scan soon so I'm going to tell her about it x

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    1. I think asking those questions will help so many babies. x

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  5. So sorry to read this, your work is going to raise valuable awareness. xx

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    1. I shared this amazing strong woman's story as I wanted to help her spread the word about the incredible charity and what they do x

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  6. I'm so sorry for your loss. It sounds like this charity is doing fantastic work to raise awareness of this issue.

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  7. My heart goes out to you both for your loss of Grace but have such admiration for your bringing awareness x

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    1. She is such a wonderful, strong woman x

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  8. I really feel for everyone who has lost a child and applaud you for making changes and raising awareness

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  9. Angela, I didn't know you lost a baby too, I am very sorry to read this! I wish you all the best with the awareness campaign!xx

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    1. Sorry, I should have put at the start of the post that it's a guest post. I was only too happy to share to help others x

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  10. I am so sorry to hear about Grace but what a great charity to support

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  11. What an amazing woman. CHD in babies is diagnosed and handled so badly. I know as one of my twins had open heart surgery at 9 weeks. It was an awful, awful experience that took me years to get over and taught me loads with regard to trusting my instincts. Without a doubt she would not be here now if we hadn't stood our ground

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    1. Oh my goodness sending you massive hugs. I am glad she got the help she needed xx

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  12. What an amazing charity and such a sad story to read :(

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  13. So sorry to hear about Grace but what an amazing initiative - so important to raise awareness.

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  14. I'm so sorry for your loss and commend you on helping to raise awareness.
    Such a strong lady and a worthy cause

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  15. sorry for your loss, great that you are doing a good thing for a great cause.

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  16. So sorry to hear of your loss.
    This is a great post, I think its a great cause. I for one will be telling my friend about the big tick.

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    1. Such a strong woman and wonderful for helping to raise awareness x

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