Hi Daisy.
Firstly many congratulations on your pregnancy and sorry to hear of your losses in your previous pregnancies.
My son was diagnosed with Right-sided Aortic Arch with Aberrant Left Subclavian Artery at our 20 weeks scan with his vascular ring already formed.
I also decided against having the amino as for me the risk of losing him was too high for me and we wouldn’t have terminated because the outcome of the amino doesn’t tell you how severe it would be if he were to have digeorge. I also looked into a private NIPT but from where I had researched and read there was 50% chance of getting a false positive which to me paying all that money for a 50% outcome to be no better off seemed a bit pointless I know that’s why they aren’t given in the NHS because you can’t always get an accurate reading in detecting Digeorge.
My thought process was if I found my baby had digeorge like I said above the amino doesn’t tell you how severe it is, so if he were to have it, it could be mild or severe but the test can’t tell you that regardless and I know some babies with digeorge live normal healthy lives.
I won’t lie I worried throughout my whole pregnancy from when we found out and had all the possibly outcomes in my head. It was hard to remain positive and enjoy my pregnancy with all that worry.
One thing where I did get reassurance was from the scans, so I know that digeorge can also show up a number of other defects like cleft lip/palate, club foot, other heart conditions and them to stop growing in the womb.
We were referred to Southampton where they confirmed he definitely had the right aortic arch but everything else looked normal. However my worry didn’t stop. At around 28 weeks my local hospital said they would do me another scan just for ressurance to check if he was still growing nicely and if they could detect anything else luckily when we went to the scan nothing else came up. This did make me feel more reassured but obviously I still had the worry, as I seemed to fall into the low percentages of things as in my first pregnancy with my daughter I had preeclampsia, she was was breech and I went into natural labour, in the early hours on the day of my planned c section so I thought well what if my baby falls into this 5% percentage too.
Fast forward to June I had my little boy and as soon as I saw his little face I knew he was fine I think just mother’s instinct. We decided to have his cord bloods taken as soon as he was born to send off for genetic testing, we had to wait 2 weeks for the results but everything came back as normal and he had no chromosome defects, was a happy, healthy little boy.
Since birth he has had a CT scan which was offered as part of the right aortic arch diagnoses and so far he’s had no issues feeding or gaining weight in fact he’s on the 98th percentile for weight and length and he’s doing so well. They said we will have more of an indication if his vascular ring will cause him issues once we start weaning him so we just have to keep an eye on him particular for his breathing or if he chokes a lot more than normal babies. We have another check up with the heart team in the New Year just to see how things are going, If he does require surgery they said it would be a simple key hole procedure so not like open heart or anything like that, but again it’s likely he may not need this. They did say however as a baby with a right sided aortic arch he would be more prone to chest infections and as it happens we were in hospital yesterday as he has got Bronchiolitis, however his 2 year old sister was poorly last week so I think he’s caught it from her so there isn’t really a way to tell whether it’s worse because of the heart condition or if it’s just one of those winter illnesses he would have picked up anyway.
Sorry I know this post is quite long but I hope I’ve provided you with some reassurance, happy to talk or answer any other questions you may have as I remember how down and scared I felt the whole time from 20 weeks it was all I could think about.
There is also a really lengthy post on right aortic arches on net mums of other women sharing their stories it’s a fairly old thread but I found some of their stories really helpful to read. https://www.netmums.com/coffeehouse/drop-clinic-984/baby-child-health-989/1231003-anyone-have-experience-right-sided-aortic-arch-27.html
I hope I’ve been some help! I would definitely try and get another scan around 28-30 weeks, see if your hospital will let you have another or perhaps pay private instead of doing the NIPT? Where you referred to another hospital when you found about the right sided aortic arch? We were but then were passed back to the care of our local hospital.