February – a month that is all about hearts. Hearts, flowers, chocolates, Valentine’s cards. For me as a mummy to a child with a complex congenital heart defect (CHD), February also has added significance with regards to hearts as it is National Heart Month, with Heart Week taking place from 7th-14th February.
Since my daughter Jessica was first diagnosed with hypoplastic left heart syndrome at her 20 week scan, I have been involved with various heart charities, helping to raise awareness of CHDs. One of these charities is Tiny Tickers, the baby hearts charity, which aims to improve detection rates, care and treatment of CHDs in babies through providing specialist training to health professionals and sonographers on identifying heart defects during antenatal scans, raising awareness of the signs and symptoms of congenital heart defects in babies and supporting heart children and their families once a diagnosis has been made.
Heart defects are much more common than many people realise with approximately 1% of babies being born with a CHD. Around a third of these will be detected during pregnancy, with another third being picked up during the standard newborn checks that are carried out on babies in hospital before they go home. The remaining third are only detected when the baby becomes unwell and approximately 1000 newborn babies are sent home from hospital each year in the UK with an undiagnosed, life-threatening heart condition.
Early detection of CHDs is vital for improving survival rates and outcomes in babies with CHDs and ensuring that these babies get the treatment they need as early as possible. One of Tiny Tickers’ recent campaigns was ‘The Big Tick’ aimed at raising awareness amongst parents-to-be about detection of heart defects at the 20 week scan and encouraging them to ask questions during the scan through providing information cards.
Jessica’s story was one of those featured as part of this campaign. Had her heart condition not been picked up at the 20 week scan, she would not be here today. She had her first heart surgery whilst she was still in the womb, at 28 weeks’ gestation, and her first major open-heart surgery at just eight hours old. As you can imagine, I am incredibly thankful to the sonographer whose skill that day helped save Jessica’s life (not to mention the amazing surgeons and other medical staff who have cared for her since then).
Jessica is not alone in owing her life to having her heart condition picked up on scan. Baby Robbie was born with a complex CHD called Tetralogy of Fallot which was picked up at his mum Hollie’s 20 week scan. His local hospital was 40 minutes away from the nearest children’s cardiac unit and had Robbie gone into heart failure due to his condition being undiagnosed, he may not have survived. You can read more about Robbie and Hollie’s story here.
Tiny Tickers have put together a toolkit for Heart Week 2015 with lots of fundraising ideas, including the Love Hearts ‘Guess How Many Sweets in the Jar’ game, to help them raise the funds they need to help provide training and raise awareness of CHDs so that more children like Jessica will have a chance of survival. If you would like to take part in Heart Week and help contribute towards the work that Tiny Tickers does, you can request a free Heart Week pack here.
This post was written in response to a request from Tiny Tickers for bloggers to raise awareness of their work and Heart Week fundraising campaign. As a mother of a heart child this is a cause which is very close to my heart. I have not received any payment for writing this post
I really didn’t know anything about this condition until I started reading your blog. It’s such an important charity, thanks for sharing #sharewithme
Thank you Zena for your lovely comment and for sharing my post too to help raise awareness x
I too did not have any understanding of this condition until discovering your blog! Thank you for posting and raising awareness! What a great charity!! #ShareWithMe
Thank you – they are a great charity and I’m glad to be able to help raise awareness of the work they do.
I knew about this condition but I don’t think I knew how many cases there were, or how serious it could be – of course I knew it was serious, but I mean in the sense of how many cases are not detected. I am so thankful that I seen Tiny Tickers post to raise awareness and glad that I can raise awareness and hopefully some money to help these unborn and newborn babies!
You’re story with Jessica is amazing thank you so much for sharing !
Thank you – and thank you too for helping to raise awareness x
This post made me cry; I’m ashamed to say I had no idea this condition existed – or that they could perform heart surgery on a baby still in the womb! You must feel like the luckiest mum in the world. Am off to find out more about this…
I definitely feel incredibly lucky to be blessed with my beautiful girl and her baby sister. Sorry for making you cry x
Its nice to help reach more people about this condition. Thanks very much. Sorry I cant help financially but would RT this as much as I can. Hope that helps a bit. #sharewithme
Thanks Merlinda – RT’ing is absolutely fine – raising awareness is also very important too! 🙂
Thank you for sharing your story, and I hope it creates awareness among others to have this scan done. I’m going to share this forward to spread the word.
Thank you so much and thanks for sharing too.
Good for you to help spread the news. I didn’t know about this at all. It’s such a great thing to help causes like this on your blog. Way to go you! Thank you ever so much for linking up to Share With Me. #sharewithme
Thank you and lovely to link up with #sharewithme 🙂
Wow I got shivers reading this, so scary to think that that many babies go home without being diagnosed with a life threatening condition. So glad all has worked out so well with jessica though it must all have been so very scary for you! Thanks for linking with #MaternityMondays xx
Thank you Caroline, it was a scary time but am so thankful it was detected when it was and hopefully raising awareness will help improve early detection rates. Lovely to link up x
I am now 35 weeks pregnant and our baby was diagnosed with a heart condition at 22 weeks, thankfully it doesn’t seem serious and he should be okay, we will have to wait until he is born for tests. I think it is very important to raise awareness of this issue and applaud you for writing and raising awareness on your blog x #maternitymondays
Thank you – hopefully raising awareness will help improve early detection rates. Hope that all goes well with the rest of your pregnancy and that all will be okay with your little one and his heart condition x
Jessicas story always leaves me awestruck! Such a brilliant cause thankyou for sharing it with #thankfulthursday
Thank you, lovely to link up again 🙂