The 20 week scan. This is often referred to as a gender scan. It’s an exciting time, being able to see your baby again and find out its a boy or girl. However, there’s much more to this scan than finding out the baby’s gender. The 20 week scan, or anomaly scan, is to check that baby is developing normally and there are no abnormalities.
Thankfully, most expectant mums will walk into the scan room, see their beautiful baby on screen, perhaps find out the gender and then walk out smiling, scan picture in hand, feeling reassured that all is well. But a few will walk out of that scan room numb, bewildered, devastated, their worlds having fallen apart. I was one of those mums. The 20 week scan detected that my daughter had a severe congenital heart defect (CHD).
Finding out that something was wrong was devastating but I was lucky. If the sonographer hadn’t picked up my baby’s heart defect, there is no doubt in my mind that my little girl would not be here today. Identifying my daughter’s heart defect at the 20 week scan led to her having pioneering fetal surgery just 8 weeks later. This surgery then gave my daughter the chance of being able to have life-saving open-heart surgery after she was born. We owe Jessica’s life to the skills of the sonographer who performed her scan (as well as all the medical staff who have cared for her since that day).
CHDs affect around 1 in 100 babies. Approximately 3000 babies are born every year with a major heart defect requiring surgery within the first year of life. Only about a third of these are detected during pregnancy. Antenatal detection improves the outcomes for babies with heart defects by helping them get appropriate medical care as early as possible. Jessica was born 70 miles from our home, in a hospital with access to children’s cardiology services and surgery. She had her first open-heart surgery at just 8 hours old. Knowing about her heart defect meant that we could plan and prepare. It therefore meant we could give our daughter the best possible chance of survival.
Jessica’s story is featured in the Big Tick campaign which is run by the charity Tiny Tickers. The Big Tick aims to improve antenatal detection rates for CHDs by helping to inform pregnant women about the kind of questions they should be asking at the anomaly scan. CHDs are more common than many people realise. They are the biggest cause of birth-defect related deaths in babies. Approximately 1000 newborn babies leave hospital each year with an undetected heart defect. Raising awareness and improving antenatal detection rates could help to improve the outcome for many of these babies.
If you are expecting a baby and haven’t yet had your 20 week scan, you can go to the Big Tick website and request a card with more information to take with you to the scan. If you know someone who is expecting a baby, please do pass this information on to them too.
I wrote this post to support the Tiny Tickers Big Tick campaign purely through my own personal wish to raise awareness of CHDs. I have not received any compensation for writing this post.
My girls heart defects were missed on both of their scans….I really don’t think they looked hard enough because specialists since have said they should have been visible on the 20 week scans…..Maybe if I had shown them this info card they may have looked harder…
Hopefully the cards will help increase early detection rates. I’m glad your girls are doing well now though x
I cannot imagine how scared you must have been for Jessica when they found out about her heart condition during the scan. As for the foetal surgery, I didn’t even know that was something that could be done. Raising awareness is extremely important. Well done to you for being that voice, Louise.
Thank you Mel – it was a very scary time but we were very lucky that it was picked up and we were given the opportunity to have the fetal surgery. Hopefully raising awareness will help increase the early detection rates for other families too x
Wow, my heart goes out to you. I’ve been terrified before each and every scan and thankfully come out smiling each time. Thank goodness they detected her condition, and were able to do something about. All the best ti your brave little girl xx #thetruthabout
Thank you Caroline – I was very aware that the scan was to check for abnormalities before I had it and I remember saying to my husband the night before that I hoped all would be well at the scan. It was a very scary time but thankfully we got through it and Jessica is doing well now x
Aw this really brought tears to my eyes Louise. I thought it was bad enough being told we had a 1 in 85 chance of Downs at the 20 week scan (mostly based on my age I think), but actually being told that your baby would need to undergo heart surgery in utero – blimey I can imagine how terrifying that news must be. What a trooper your little Jessica is. The Big Tick campaign seems like a really good idea. And let’s give a big shout out to all the brilliant sonographers out there too! 🙂 Thanks so much for linking this up to The Truth about… this week hon X #thetruthabout
Oh my goodness, that must have been a worrying time for you too – glad that all was okay. We were very lucky to have such a good sonographer who did manage to pick it up – yes it was all very scary at the time but looking back I know how lucky we were that it was picked up because it gave Jessica a chance of survival. Hopefully by sharing this I can help make others more aware about what kind of things are looked at on the 20 week scan and improve early detect rates. Lovely to link up to #thetruthabout again this week x
Well done for raising awareness Louise, having read your previous posts on Jessica’s condition and operations these cards sound like a really important step. #thetruthabout
Thanks Sara – raising awareness is definitely a cause which is very close to my heart!
Oh my goodness that must have been devastating news at your anomaly scan (it annoys me when people don’t refer to it as this!) I had no idea that fetal surgery could be performed – the abilities of the medical profession never ceases to amaze me. Well done you for raising awareness of such an important cause. X
Thank you – it was a very tough time but so glad that we had the opportunity to have the fetal surgery and that Jessica is doing so well now. Was very impressed by the skills of the team performing the surgery and very thankful to them for giving Jessica that chance. I get frustrated too when I hear the 20 week scan called the ‘gender scan’ – finding out the gender is a bonus, not the purpose of the scan! Hopefully making others more aware will help improve early detection rates x
This is a really informative post, thanks for sharing your story. Cannot imagine how you felt at your 20 week scan.
#thetruthabout
Jenna at Tinyfootsteps xx
Thanks Jenna – it was a very frightening time but hopefully sharing the story will help raise awareness and improve outcomes for other babies too x
Oh it must have been so awful and so scary. Bless her she is gorgeous x #TheTruthAbout
Thank you Aby, it was a scary time but thankfully she is doing well now – so glad her heart condition was picked up at the scan and we were able to have the fetal surgery x
This is a fantastic post!! So important to share the word that it’s not just about finding out the sex of your baby at the 20 week scan!
That picture of baby Jessica is so beautiful and yet so sad. She truly is a little miracle and I can only imagine now looking back how great fun you must be to the sonographer even though at the time it must have been so hard to hear.
Thank you – I think it is a beautiful picture too but she was very sad that day as she was feeling quite poorly after one of her ops (and ended up being transferred back to PICU later that day as she had parainfluenza – no wonder she looked so sad). Raising awareness of early detection of congenital heart defects is something I feel very strongly about – I know just how lucky I am that Jessica’s heart condition was detected when it was x
Well done for writing such a difficult post Louise, I cannot imagine what you guys have been through! As you said thank goodness Jessica’s heart problems were detected at the scan and all has worked out the way it has. HUGE hugs lovely lady xxx
Thank you Rene̩ Рhoping to raise awareness and improve early detection of congenital heart defects by sharing our story. It has been a very tough journey since that scan appointment but we have been very blessed that Jessica has done so well x
Wow what a powerful post, thanks for sharing. I’m so sorry you had to go through that scare, it’s good to be reminded how important those scans are and what they are really for. Much love to you and your family, you’re supporting a great cause xx #sharewithme
Thank you – it’s definitely a cause that is very close to my heart. So glad that Jessica’s heart condition was picked up then x
Way to go you hunny for raising awareness. Bless you I can’t imagine what you must have felt in that moment. I didn’t know that’s what they are looking for in the 20 week scan either. Amazing what technology can do, so glad they caught it. WOW powerful story. You are great to share it. Let others know they might be going through the same. Thanks for linking up to Share With Me #sharewithme
Thanks Jenny – raising awareness is so important and will hopefully help improve outcomes for other babies. Agree that it is amazing what technology can do and the medical teams that have looked after us since that day have been superb. Lovely to link up again to #sharewithme
My heart ached and my eyes filled with tears as I read your blog post. My youngest sister died of a CHD at just a few days old. It went undiscovered until her birth and it changed our lives forever. That was 30 years ago and having four children of my own I never missed an ultrasound appointment. Thank you for sharing your daughter’s story and for helping to promote awareness and educate others about the importance of the 20 week ultrasound appointment!
Hope you have an amazing day!
xx
Lysa
Lysa, I am so sorry to hear that your lost your youngest sister to a CHD, how devastating that must have been to you and your family. I don’t think scans were as routine back then (my mum never had one with me and my twin) but glad you made sure you went to all your appointments and hope all was well at each. Thank you too for taking the time to share your story with me – I do feel it’s important to raise awareness and help improve outcomes for other babies x
Thank you for writing and sharing this and I really admire you for telling Jessica’s story and sharing in the campaign – I am sure it will do so much good.
I can’t imagine how it must have been for you both, seeing Jessica go through so much. She looks so beautiful and peaceful in that image as well – not what any young baby should have to go through though. I hope any future surgery goes as well as it possibly can and thanks again for a great, thought-provoking post. #brilliantblogposts
Thank you Yvette – it has been a hard journey at times but so lovely to see how well Jessica is doing now. Hopefully by sharing our story we can help increase awareness of what the 20 week scan is trying to look for and improve detection rates for other babies x
I think so many of us go into that scan just expecting to find out the gender, I can’t imagine how scary and worrying it must have been during that time but so glad the Sonographer picked it up at that point and you got really good care. She looks gorgeous in that pic x
Thank you – I do think there needs to be better awareness of just what that scan is looking for. We were very lucky to have Jessica’s heart condition picked up so early. It was a very scary time but so good to see her doing well now x
Thanks for sharing this. What an incredible journey you two have been on! So wonderful things were picked up in time. WIshing you lots of love and luck for the future x x
Thank you – incredible is a good word to describe it – it has been tough but we have been very blessed and it is amazing just what medical technology is capable of. We are so thankful that Jessica’s heart condition was picked up so early – hopefully raising awareness will help increase detection rates for other babies too x
When we did this scan I am alone as my husband is here in the UK and we (baby & I) are in the Philippines. I am having a hard time breathing then as my tummy is heavy and they want me to lie sideways. My son is okay but this scan is scary esp when you are alone. This is such a good cause. A great help for mothers who will undergo this scan. A nice blog post. #brillblogposts
How scary for you having that scan on your own. My hubby nearly missed the scan too – even more thankful he was able to be there looking back now on it all. So glad that all was well at your scan and thank you for your lovely comment – hopefully this post will help raise awareness too.
Thanks for sharing your story, it’s wonderful to hear that Jessica is doing well after such a terrifying start to life. I hope this campaign is successful in helping others during the antenatal period. All the best to you Louise. #brilliantblogposts
Thank you – yes hopefully the campaign will help other babies and improve outcomes – it’s definitely a cause I feel very passionate about. It has been very scary at times but it is all worth it to see Jessica today and doing so well. Thank you for taking the time to read and comment.
This post has just struck a nerve with me, I am 23 weeks pregnant and had our second anomoly scan (baby just wasn’t playing ball at the first) just 48 hours ago where we found out there is a problem with our babies heart valves, we have a specialist scan on Monday to find out more. We are anxious and a little scared but our sonographer was great and said she had seen worse and is a common problem that can right itself so our baby could be ok and hopefully will not have to go through what Jessica has. I feel for you and your family and wish you all health and hope for the future x
So sorry to hear that the scan has picked up a problem with your baby’s heart valves and will be thinking of you on Monday and hope that the scan will give you some positive news. It is amazing what the medical teams can do and I really hope that all will be well with your little one. I am sure this must be a scary and anxious time for you – sending hugs your way and keeping you all in my thoughts and prayers xx
Louise this made me cry! I cannot imagine how it must have felt to have been told such devastating news but thank goodness for the sonographer! What an amazing little girl you have to have gone through so much in such a short space of time. I am going to share this on my Facebook page as it is so important for everyone to know about. x
Sorry for making you cry Katy – it was a very tough time but we are so thankful it was detected when it was and that Jessica is doing so well now. Thank you so much for sharing this via your facebook page too, hope you have a lovely weekend x
Such a helpful post Louise. I think parents need to know this is a very detailed scan and that stories like yours are why they are so important. I’m so pleased her issues were detected and that she got the surgery she needed. The other outcome just doesn’t bear thinking about. Great post, as always
Thank you Zena – raising awareness is something that is so important to me. We were very lucky that Jessica’s heart condition was picked up so early on and that she is doing so well now.
Thanks so much for sharing this, huge congrats on your pregnancy and so glad Jessica is doing well, hope this campaign is really successful! Thanks for linking up to #brilliantblogposts
Thank you Vicki – I am glad that Jessica is doing well too and fingers crossed the campaign will help improve outcomes. Thanks too for the congrats although am not currently pregnant – was sharing this as Jessica has recently been featured in the campaign and to raise awareness. Lovely to link up to #brilliantblogposts and thank you for hosting 🙂
I cannot imagine what you went through at that scan, I was stressing about the fact that they couldn’t get all the measurements they needed and I had to go back a week later.
I am definitely going to pass this info on as I know a couple of pregnant ladies.
Thank you Jenni – really important to raise awareness of this and hopefully improve outcomes for other babies. I know we were very lucky with having Jessica’s heart condition picked up so early.
I was so pleased to hear that your little one is doing well. I can’t imagine how grateful you must be to the keen-eyed sonographer! I wish you and your little one all the best. xx
Thank you so much – she is doing really well at the moment, and yes we will always be very thankful that the sonographer picked up her heart condition at that scan! x
It is hard to remember that the 20 week scan is the anomaly scan and not the sexing scan! Thanks for your post; its a great reminder.
Thank you – I think now that finding out the gender is much more the norm, it has shifted the focus on what the scan is for on to that rather than screening for abnormalities. Hopefully sharing this will help raise awareness and help mums-to-be know what questions to ask too x
That’s a great post. Neither of my boys conditions were picked up before they were born and we were very lucky that things worked out well for them regardless. I’m glad someone has taken the initiative to raise awareness like this.
Thanks Philippa – so glad that all worked out well with your boys. Helping to raise awareness of things like this is really important to me, especially as it may help improve outcomes for other babies
Thank you so much for sharing your story; I think the pair of you are amazing. I think more awareness is needed for CHD and you are doing a fab job of seeing to that. Thank you for linking up to #MaternityMatters x x x
Thank you – CHD awareness is definitely a cause that is very close to my heart. Lovely to link up to #MaternityMatters x
Wow … reading this made me shudder. I remember my funny reaction when I found out we were having a different gender than we had thought; my feeling pales into insignificance considering that not everyone comes out of the scan room smiling. It’s wonderful to know your daughter is doing well and that her outcomes were significantly improved by the detection during your 20weeks scan. I’m so glad I know about this campaign for the mothering road; I’ll be pinning it for future reference.
Thanks so much for sharing.
Thank you – raising awareness of CHDs is something I feel very passionate about and glad you found the information useful x
I forgot to include #MaternityMatters
I had my anomaly scan last week and w was genuinely surprised by the number of other women waiting who only talked about gender and not about the real purpose of the scan. With all three of my pregnancies I’ve been very conscious that it’s a serious procedure and worried that the sonographer would find something. Thankfully all has been well. Thank you for sharing your story.
Thank you – it is amazing how much focus there is on the gender side of things and how easily forgotten the real reason for the scan is. So glad that all was well with your scans.