Right Aortic Arch

[maria274]

My baby boy has been diagnosed with an Right Aortic Arch at 20 weeks scan and it crushed us, trying to stay positive but really scared.

Is there any other mums out there who’s babies have had this and been fine? Also, has anyone had the amniocentesis test and was everything fine?

Hi @maria274

My husband and I are in exactly the same situation as you. We had the amniocentesis. What type of RAA does your baby have?
Our baby has a right aortic arch with a right duct. We have been seen by Kings and waiting for the result of the amnio.

Have you had the amnio? Have you had any results back yet? How are you feeling? X

Hi @Dahlia1993

How are you feeling? I hope you’re ok, I know it’s hard, we’ve had such a hard time processing the news. It’s truly a rollercoaster of emotions but I have done so much research and while it’s rare it’s also very common because a lot of people go on with their lives not even knowing they have this especially back in the day where they weren’t really advanced in fetal medicine.

Exactly same as yours, right aortic arch with right duct. I had amnio at kings and the first results came back which were good but waiting for the results for di george syndrome and the waiting time is killing me. I’m trying to remain positive and enjoy the pregnancy during this time but it’s hard.

we had our report from Evelina and it seemed positive which gave us hope and also seen other cases with good outcome online.

When did you had amnio?

Hi @maria274

Sorry to hear your in the same boat - it's horrendous isn't it. I'm struggling with the constant anxiety of the unknown and its almost like I have put a pause on the pregnancy psychologically. It sounds like we are in the exact same position. Amnio was on the 7th, first set of results normal. Second scan with genetic team also normal. When did you have your amnio? Did they say to you 10 working days?

The cardiology nurse said to us that this was the least common form of RAA so it's reassuring to hear someone else in the same position. I have read so many research articles I think I could start a literature review. It does seem like RAA with a right duct is less prevalent in Di George but I'm sure I'm reading with some bias and taking what I want from each article.

I couldn't wait and called yesterday to see if there was any chance of earlier results and I was told to ring Monday/ Tuesday next week to enquire again.

Have you considered what you would do with a digeorge diagnosis? How do you feel about it?

Yes I feel the same, I sometimes feel like it’s not fair I haven’t enjoyed my pregnancy the past two weeks like I should but it’s hard.

I try to take what’s positive from articles and stories online, the article from royal Brompton was helpful.

I have my amnio on the 19th and the second scan and it was also normal, when they called with the first results they said it will take 10 more days. The report from the first scan from Evelina was positive and they said it’s very unlikely he will need surgery and it seems like it’s all working fine and how the baby is likely to not have any symptoms, so it helped with my anxiety a little bit.

I honestly don’t know, when I think about it I just burst out crying, it’s so hard because you just want your baby to grown and live life normally.

I still try to hold on to the hope of this genetic defect being very rare, we were told it’s 15% chance at our appointment at Evelina.

How many weeks are you now? If you had your amnio on the 7th I’m sure they should’ve got back to you by now if they were to find anything x

We had our amnio on the 20th, sorry. I don't even know where the 7th came from?!
I am currently 21+3
How many weeks are you?

Kings said to us that we hold a 4-8% chance of Di george and 12% chance of a chromosomal abnormality. Did you see the genetic consultant? Is your baby of normal size and normal nuchal translucency?

Same thing with surgery not needed as right sided duct so all positives. Just need this amnio results don't we!

Yeah we are also in a cross that bridge if we need to mind set. Xx

I am currently 22+3 weeks
We had the genetic scan at our 20 weeks scan locally, and then we were referred to fetal cardio at Evelina, and second genetic scan + amnio at Kings.
Both genetic scans were fine, normal size & nuchal translucency. We were given a 15% chance of any chromosomal abnormality associated with RAA.

Its the waiting time for amnio that's horrendous. I really hope its all fine.

The RAA diagnosis even if its sounds scary, the specialist report is positive so try to keep positive as well.

Let me know how you're getting on and when you receive your amnio results, I hope its all good xx

Wishing you all the best with your results. I will let you know how we get on and vice versa. If you need to talk in the meantime I'll keep an eye on the chat

Xx

Thank you, take care and same, if you need to talk I'm here. Hopefully all goes well xx

Good luck this week, wishing you all the best with your results xx

Hi @maria274

Been thinking about you today too! Have you got your results yet? Xx

Hi,

I haven't yet, I was thinking to call them but to be honest I'm scared. Have you called them? xx

@maria274 I have called about four times. I think they knew I was loosing the plot so they have literally just called me and normal results.
I called 02032998254.

Keeping my fingers crossed for you. Please let me know xxx

I'm so happy for you, I just called them and normal results too xx

@maria274

That is absolutely brilliant news. Absolutely thrilled for you! We can now enjoy our pregnancies and stop all the worrying. Keep in contact, we can share our RAA babies journeys xx

@Dahlia1993
Yes, results are normal, specialist report is all good, finally we can enjoy, great news for both of us, I'm thrilled.
Keep in contact, and warmest wishes to you and your baby xx

Hi @maria274

How are you getting on?
Sorry I can't log into my last account
Xx

Hi, we’re doing great. Baby’s here he was born on the 29/10/23. He’s amazing and healthy and all his checks are great.
how are you? Hope everything is going well xx

Congratulations! Amazing news 🙌
We had a little boy 3 weeks early on 20th October and checks all fine, perfectly healthy. Amazing outcomes, so glad xxx

Sorry ladies, I was in same situation about 2yrs ago. My writing is not good and I wish I could have evaluate more on this topic.
My son is 14 months and perfectly doing fine so far and still under Doctor's observation.
No Dgeorge syndrome
No surgery was needed after birth.
I will this could help, you guys can also pm me.

Thank you for sharing your experience it’s really helpful

Hi ladies,

how’re you all getting on?

just had my anomaly this week and was told baby has RAA - no other abnormalities detected and otherwise normal. Suspecting a vascular ring. Came as a massive surprise after 3 normal, low risk pregnancies.

completely indecisive re amnio at the moment - usually chromosomal abnormalities have other anomalies that are identified too, particularly the thymus in Di George’s - none of which baby has so not sure the risks of amnio outweigh the risk of a chromosomal abnormality at the moment. Heads all over the place!

Hi,

I hope you’re ok, I know how you’re feeling I was so stressed and worried, unfortunately there’s isn’t much information available online but from our experience I can say it had been a stressful process we had the amniocentesis and it all came back normal and when our son was born we had a final specialist appointment and confirmed the RAA is normal variant with no abnormalities, he is amazing a perfect baby and it’s been the best 9 months of my life he is very healthy energetic and just a happy boy. I know what you’re going through now I would opt for the amniocentesis because it would be a stressful time constantly thinking about it, when we got the results I finally enjoyed my pregnancy properly and not worried anymore. I hope it all works out and all goes well. Good luck xx

@Seashore88

Hi there,

I really hope you are okay. It can be a really stressful time. I remember how I felt and what a scary time it was. I also had the amino and the results were normal.

The wait for the amino results were really tough and I struggled a lot in that time. We are so lucky that we had a normal result and looking back now, I am glad I had it done. Personally I would have struggled not knowing before the birth but it's totally different for everyone. Your right, from all the research I read ( & I pretty much did a literature review) there most definitely seems to be other abnormalities found in addition to the RAA.
I wish you all the best and will keep an eye on the thread. Feel free to message. Look after yourself and good luck xx

Im 56 with Di george syndrome and my daughter is 26 with it. So if any one wants to know about living with the syndrome. im happy to talk about it.

I just wanted to comment on this thread with my story, as when I found out about my babies RAA I found myself searching threads for positive stories!

we found out about our babies right aortic arch (with left subclavian artery) at 20 week scan. It crushed us. We had no clue what it really meant and were so worried. We had our scans at great ormond street and they were great. It was reassuring to hear the consultant say that on a 1-10 scale for seriousness, right arch is probably only a 1 or 2 compared to some conditions they see. This was reassuring!

we were told about the digeorge risk which worried me more than the heart defect to be honest. We were offered the amino but I didn’t want to take the risk. Instead, we paid privately for the blood screening test which showed a low risk. Although not 100%, this was enough to help me enjoy the rest of the pregnancy. I’d definitely recommend this and there are many clinics that offer this and many brands of test - harmony, panorama etc. the % fetal fraction when I had the test at 26 weeks was 15% which is high - again this was reassuring knowing that any issues would surely be picked up. Just make sure you pick the test that includes microdeletions for DiGeorges.

Fast forward and our beautiful baby was born 3 weeks early a month ago and is perfect! Her cord blood was sent for genetic testing which came back clear. The doctors were all fantastic. She did end up in NICU for a couple of days but that was nothing to do with her heart. We are awaiting her next cardio appointment when she is a few months old but currently no signs of any issues with breathing etc. she is a totally normal baby.

i know the journey isn’t over and we may encounter issues as she gets older (hopefully not) but so far so good.

i wanted to write this to reassure those of you who are desperately searching for positive stories following a diagnosis. I see you and totally understand what you are feeling. Be positive and don’t stress - please enjoy your pregnancy as I wish I didn’t spend so much time worrying. I appreciate not all outcomes are positive and sending love to anyone in that situation.

all the best and good luck to you all. X