Coarctation of aorta

[Foreverhoping33]

Hi All,
i just had my 20 week scan with my first baby last week and we have now been told that it looks like baby has coarctation of the aorta which will result in surgery as soon as he is born, and potentially more surgeries throughout his life.
I am very worried about this and would love to hear from anyone else who has also gone through this and how their babies are doing?
I have also read that false positive results can be common at this early stage so would also like to hear if anyone was told their baby May have coarctation of the aorta at 20 week scan which then ended up being fine?
thanks. Xx

Hi @Foreverhoping33 I am 33 weeks today and my baby has possible coarctation of the aorta which was found at 29 weeks. We have had two heart scans done by GOSH. I know it’s terrifying but it’s good that it’s been found now as a lot of cases don’t get found until after birth. I recommend Tiny Tickers website for similar stories. If you have any questions please ask away (as I am a quite a bit ahead of you). All the best x

@bookbathnap thank you so much for your response. Sorry to hear that your baby also has possible coarctation of the aorta. How are you finding it?
After now knowing for nearly a week and doing lots of research on the tinytickers website I am feeling slightly better but still terrified.
we are currently planning on having delivery and surgery with st Thomas’ and will have more scans at end of November to try and find out more about the coarctation. Do you have any idea how severe yours in? Our initial z score is -4 I think which seems very severe to me (though I don’t really know!).
do you know what your birth plan is? I was desperate not to have a c section previously but not think they want us to have a planned delivery so the options are being induced or c section so unsure what is best. Not sure if we will actually have a choice either.
this is our first baby how about you?
sending love!
ps- sorry for all the questions.

We were told at 28’weeks about possible coarctation- this was a real blow as his brother had been born with a different heart condition. He had a series of scans straight after birth and he didn’t have it. The DR said he could understand why they thought he did have but it was to do with the specific angle of the antenatal scan.

all this said- I know this is really upsetting but the baby- heart Drs ( from my experience with my other son) are amazing. So Knowledgable, so kind just the most amazing people I have ever met. And so if you do end up on this pathway please know you and your baby will be looked after.

much love to you all xx

@Foreverhoping33 I’m not sure how I’m getting through it but I am! I am lucky to have an amazing husband and lots of support around us both. Also having counselling and reiki healing to provide extra support. It’s incredible what you can deal with when you have to. The doctors haven’t given a severity rating and I think I’d rather not know. I asked about chances of it happening or not and they said it could go either way.

They did say that the survival rate of the surgery was over 98% though so that’s reassuring. Our baby will either have open heart surgery or up through her side depending on how bad the COA is (if at all).

Birth plan hasn’t been discussed much but I do know that they will deliver her via c section as will be less stressful for her. This will happen between 35 and 37 weeks depending on how much she grows as she is also a very small baby.

This is our first baby too! Everything was so normal until we found out and then over the last 3 weeks have turned our lives upside down.

The doctors and midwives have been absolutely fantastic and really thorough with their checks. I feel well looked after. I’m sure you are also in good hands.

How are you feeling today?

DS1 is 26 now. He had a coarctation of the aorta and a bicuspid aortic valve which were picked up when he was born. He had surgery to correct the coarctation when he was 2 and has had checkups since then. He’s been told he may need further surgery at some point but so far everything looks fine. He can’t have tattoos (yay!!) and has to take antibiotics before certain dental procedures but apart from that he just goes about his daily life. He keeps fit and active which he as advised to do, keeps his weight down and doesn’t smoke - common sense things.

I sympathise - when he was diagnosed we were terrified and the heart surgery was a nightmare for us, but we were told that out of every congenital heart condition a baby could be born with a coarctation was perfectly treatable. I hope everything goes ok for you 😊

Not a baby anymore but DD1 was born with coarctation of the Aorta, however it was not picked up until she was a week old. I was a naive and very young parent, it was my Mum who realised something was not right and our GP came out within hrs, suspected a coarctation and sent us straight to A&E were it was quickly confirmed. To cut a long story short DD had the operation when she was 10 days old. The surgeon and the hospital were amazing and she was allowed home 2 weeks later.

DD is now mid thirties and has had no further issues at all. She has check ups involving an ECG scan every 3 years and is a fit and healthy 35 year old having had a very normal childhood and education. DD also had preventative antibiotics for any minor issues when she was younger although I had almost forgotten this now.

I think if your DS does have it you can be sure he will get the best treatment possible as they will be looking for all the signs as soon as he is born and will operate quickly if necessary. As @SirChenjins said it is perfectly treatable once identified and most will have a good outcome.

If your baby does have it then you are very lucky that it has been found so early and the medical team will be ready. This is very much a positive thing as a baby with this issue will deteriorate very quickly if it is not found in good time. I know it is hard when you are pregnant but I would try to relax in the knowledge that it is better that these things are found now and the treatment can be planned for rather than having it diagnosed later on once your baby is born, it really was quite truamatic at the time (especially for an 18 yr old single parent). Good luck to you and your families (both @Foreverhoping33 and @bookbathnap )

I am also aware of a baby in my husbands wider family who has had the operation within the last year. They are also doing fine and are a perfectly normal 1 year old baby. I'm not a medical professional and have not done the research but I think this is quite a routine operation now which has been practised for decades and has a very high success rate.

@SirChenjins @Kelvinmcloud @Mumski45 thank you for sharing your experiences. Makes it much less scary to know you’re not alone.

@Foreverhoping33 let’s keep in touch if you’d like to. Wishing you all the best.

@SirChenjins @Mumski45 @Kelvinmcloud thank you all so much for sharing your experiences! It is so good to hear about real life successful outcomes (and false positives 🤞) I can’t explain how much reassurance I take from you all! And as @Mumski45 has said I am really trying to take the positive that it has been diagnosed early and as a result we will get the best treatment and care!

@bookbathnap thanks for your updates too. I’m so glad you have lots of support around you from DH and family. I also feel very lucky in all the support I have. And as you said the doctors so far have been great!

I think you are probably right in not knowing severity of coarctation is better and I think I will probably choose (be told to have) a c section too to reduce stress on baby!

i would love to stay in touch over the next couple of weeks and will be thinking of you lots!! Xxxxx

Hi all,
We are in a similar situation OP.
Currently 21 weeks and had to be referred to fetal medicine after 20 week scan.
They believe baby has coarctation of the aorta and although they can't confirm 100% due to picture quality because of my BMI they have said it's highly likely.
We were only given this news yesterday and today I feel so overwhelmed.
I've been told I will probably deliver at St Thomas hospital in London rather than my local so baby can be scanned and treated asap.
As other posters have said, it's quite rare to find this out during pregnancy so I feel blessed we can plan accordingly but for now it feels almost completely out of my control!

Hope it all goes well for you all. I remember very vividly how worried DH and I were so you all have my sympathies. Sending you best wishes and positive thoughts for the coming months

Hi @Mummyofatinyterror I’m so sorry to hear that your baby may also have CoA, I agree it’s such a scary and overwhelming thing to be told at this stage.
I am really fluctuating between thinking it will all be fine and manageable to being terrified about what it will all mean long term. But as you said being caught early is definitely for the best so we can plan and be prepared!
when is your due date? I wonder if we will overlap in st Thomas’ 😊! Our baby is due 15th feb.
We were advised to have an amniocentesis and are expecting the results back of that this week I think, definitely feel like that is the next milestone we have to reach and pass and then maybe I will be able to relax a bit again.
sending you lots of love and hope you feel a bit better soon, I really do feel like we are the lucky ones in some way as the possible CoA has been caught so early so we and babies will get the best care!
xxxx

Another coarctation here. DC is 12 and you'd never know now, we have regular checks that's all. When DC was a baby the ward was full of heart babies and we were told everything had gone well but you can't help worrying of the future and we had no idea what the future would look like....I'd have loved to have heard of older kids who had survived and thrived. And even now hearing about the older DC above is some comfort.

All the best, it is amazing what drs can do and how resilient babies are (we were home after 4or 5 days I think), but remember to look after yourselves and your mental health too!

@Foreverhoping33 thank you for your reply.
We are due 29th Feb but will likely be induced so quite possibly! It would be nice to have someone to compare experiences with and support!!
It's absolutely terrifying I agree and I feel very similar too you. From the research I've been able to do, the success rates from the operation seem very good and that babies go on to lead happy and healthy lives just with regular monitoring. So that is positive!
We had a full scan done with fetal medicine yesterday and they couldn't see anything else untoward which felt like a relief. We haven't had the test done as I've suffered a few miscarriages and I felt like I just couldn't risk it, how have you been after yours?
Xxx

I don't know if they still do but st Thomas's used to run anti natal classes for parents whose babies had CHDs so you could meet other parents in same boat due at same time. Meant there were a few familiar faces around ward

Just to update you all, the doctors decided at 34 weeks it was time my baby was better out than in as her blood flow through the cord was showing as absent.

She was born by c section at 34 +2 and is doing really well. She didn’t need help breathing and is going from strength to strength. She had 3 scans on her heart at GOSH which showed that the coarctation had not developed and she would not need surgery! 🩷

At 1 week old we breastfed for the first time today! She will have a short stay in special care while she puts on a bit of weight as she was a dinky 2lb 15oz when she was born.

@bookbathnap congratulations! Wonderful to hear your dd is doing well.

@bookbathnap omg congratulations that your baby girl is here and everything is going well!
also amazing news that the coarctation did not develop and surgery is not needed, you must be absolutely over the moon!!
hoping all goes well over the next couple of weeks and you enjoy your little newborn. Sending lots of love. Xxxx