Heart defect at 20 weeks.

[TT112]

Hi all.
I had my 20 week scan where they found an anomaly with the baby's heart. I was sent to another hospital for further scans where they suspected that the baby had a right aortic arch. They then referred me to a specialist for further scans as my baby is always in an awkward position to get a definite answer.

I went to Liverpool Womens on Monday last week and although baby is in his usual face planting position the view was difficult but the suspected diagnosis is possible VSD in the bottom 2 chambers and a Double Arch (Vascular Ring).

I need to re attend tomorrow for further scans. Must say that the staff and the cardiologist were very reassuring and excellent at explaining the conditions. This is an IVF baby and my last chance at being a mum.

I have decided not to do the amniocentesis as for me it won't change the outcome. I am aware that there is a small chance of chromosome 22 defects.

Has anyone else had this diagnosis? What treatment plans were put in place?

[Peacefullythoughtful]

Hi
My daughter has a right aortic arch diagnosed at the 20 week scan. I too declined the amnio as we had no soft markers of digeorge syndrome (22q11 deletion) . She is 13 months now , totally gorgeous and completely fine. The consultant called her RAA a variation of normal. It’s a scary time ( I remember it like yesterday ) but the cardiologists are amazing and there is so much they can do now. If I can help at all feel free to pm me. Take care

[TT112]

@Peacefullythoughtful Thank you for your reply. They initially diagnosed RAA. On our way to hospital now for the re-scans which will hopefully give us a diagnosis. Nice to hear im not the only that decided against having the amnio. There are no markers for Digeorge so far. Lovely to hear also that your litle girl is doing so well.x

[MoreMaltesersPlease]

Not quite the same but I found out my IVF baby had congenital heart defects at the anomaly scan, like you we declined the amnio and opted to have genetic testing after the birth as we had gone through a lot to have our baby and there was absolutely nothing that would convince me not to give him every chance to fight. He's now 4 years old, on the surface he looks like a perfectly healthy child despite all his problems at birth and in his first year. When he was born (prematurely) it turned out he had other undetected congenital defects so his heart wasn't even the biggest concern. I remember all too well how terrifying it was to hear such news, but we have such amazing care for these children from the NHS, and there is so much support out there (lots of groups on FB and charities you can contact) so please don't feel like you have to go through it alone x

[Peacefullythoughtful]

How did you get on with your scan today OP? Hope all went well

[Ivfmommy2b]

Hi @TT112, I’ve not long been through exactly the same as u are currently going through. My baby is also from ivf so I know how your feeling. Same as u RAA diagnosed, had further scan at 28 weeks, same diagnosis as at 20 week. I did have the amnio, which was all clear. I was so scared. Cardiologist doesn’t need to see me again now until after baby is born, can deliver at a normal hospital, there’s an alert on my notes for the baby to be checked at birth. Cardiologist said 75% of babies with RAA don’t require surgery. There is a big thread on netmums on RAA, none of them babies have issues either which is so reassuring. Xx

[moita]

My daughter was found to have an RAA at the 20 weeks scan. We referred to GOSH who also found 2 Vsds - one very large. I did have the amnio and it was all clear.

When she was born she did struggle to feed and put on weight so was taken to NICU. We stayed in a week but she soon started feeding and gaining weight. We were told she would need surgery in the first 6 months but the small VSD has healed and the large one is healing on it's own. She is nearly 2 and has escaped surgery.

Try and enjoy your pregnancy. VSDs are a common operation and you're in good hands by the sound of it. These babies are tough little things!

[TT112]

Hi all. Thank you for all your messages. Ive now had the new scan which revealed no VSD. However the Vascular ring/Double arch was confirmed. Extra care and Peadiatrics at the birth. They explained that issues may present up to 2 years in either breathing or feeding. They gave loads of advice and put me in touch with a Cardio nurse from Alder Hey. Feel much better because i now know what im dealing with.

[Firsttimemumleah]

Hi all,
I'm hoping for any advice and support.
My baby girl is 9 weeks old amazingly beautiful and seems So so healthy.
At my 20 week scan she was diagnosed with RAA this was obv a very worrying time. Now she is here I feel much more reassured as I can see how much she is thriving. We had an appointment scheduled with a cardiologist yesterday and when we got there it was a different doctor who is a paediatrician with an interest in cardiology this did not fill me with much hope although she was lovely with my daughter she did not have much of an explanation for me apart from what I already now from my own research. I have contacted the hospital and am having an appointment rearranged with a cardiologist.
Can my baby be healthy and thriving and then experience a dip in their health with this condition? What should I be looking out for?
Any help will be greatly appreciated.
Thanks

[Ivfmommy2b]

@Firsttimemumleah hi. My baby is 10 weeks, she also has a RAA. We finally have our appointment scheduled for 19th March. I’m praying all goes ok & that I will feel less anxious about her health after the appointment!
That’s so annoying about your appointment!!

[Firsttimemumleah]

@Ivfmommy2b
Its an anxious time thank you for your message.
I have actually recieved another letter this morning with a further appointment with the Head cardiologist thank god.
This appointment is on the 26th March.
I hope all goes well with your little one xx

[Nevic84]

My daughter had a vascular ring had the surgery at freeman in February 2018 at 2.5 years to correct it. Double right aortic arch with left subclavian.

[Ivfmommy2b]

Hi @Nevic84, hope your daughter is doing well. Do you mine me asking about her surgery? Did she have any issues prior to her surgery at 2.5 years? Just wondering why u was done at 2.5? X

[Nevic84]

@Ivfmommy2b Francescas ring was missed at every scan & not picked up even though from birth she presented with noisy breathing ( think wheezy from toy story)
She had Dysphasia and other issues but a vr was never looked into cystic fibrosis was there main guess. Came back negative eventually through a lot of Perseverance they did a scan that showed the vascular ring fast forward a 2 months she’s having surgery at freeman
Immediately post op she had a stridor, sats where fine talking took so much effort but they said it was from vent, shot of steroid but no improvement.
Eventually got transferred to rvi for a bronc where it showed she had bilateral vocal cord palsy and Severe floppy trachea. The vocal cord palsy is a very rare complication of the surgery ( as they go in through the back through ribs it’s a very difficult surgery! Glad to say she recovered really fast from surgery was out picu in 2 days!!! Any where long story short she had no improvement and ended up having a tracheostomy. Never stopped her doing nothing she’s an amazing girl!!! You always have to think of pros & cons. The way I looked at it was the heart was not an organ I was gonna mess about it. Left longer and anything could of happened.
I wouldn’t say the surgery was great as we where one of the unlucky ones but she’s alive she’s happy and she never shuts up!!!! Xxxx

[Nevic84]

This a pic of her scar at time and 2.5 years later it’s practically disappeared x

[TT112]

@Firsttimemumleah Hi so an update. I had Henry in Feb. His appointment was cancelled in April but i finally got an appointment last week. The cardio consultant scanned and confirmed the ring was no longer present. He diagnosed a RAA with left subclavian. He said that Henry should be sble to feed ok. However keep a look out for abnormal breathing sounds. He was happy to see him again in 6 months.

[Firsttimemumleah]

@TT112 that sounds promising.
We actually went for Rosie's appoitment at Alder Hey last Tuesday. Everything went perfect she is now 7 months old and perfect weaning well and loving it. No signs of Stridor or trouble eating. The consultant said Rosie's RAA is a variant of normal and we have been discharged and wont need to see the consultant again. It couldn't have gone better. Xx

[TT112]

@Firsttimemumleah What a great outcome. Excellent news x