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Pregnancy

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Original poster

Interrupted aortic arch

11 replies

SueKatieRose · 12/01/2019 08:44

Hello,

We have just found out that our daughter (who is due in May) has an interrupted aortic arch (IAA) and a large hole between the chambers of her heart (VSD). We have been told there is also a 50% risk of Di George Syndrome and roughly a 10-20% chance of other serious chromosomal abnormalities (Downs, Edwards, Patau's) - we will get the results of the chromosomal screening on Monday. This is the hardest weekend of our lives; we can only wait and hope that she doesn't have the chromosomal conditions on top of the heart defects.

Irrespective of the chromosomal outcome, we have been told that she will be unable to survive beyond the first few days unless she has open heart surgery - plus possibly multiple open heart operations (2-3) over her childhood.

If anyone has been through anything like this, please could you find a few moments to share your story with us this weekend. We have been told our little girl's condition is 1 in 50,000 and we know nobody who has experienced anything like this. We are very frightened and feel very alone.

Even if you have not been through this, but are able to send us a little of your hope and prayer, we would be so grateful.

Thank you,

Sue, Katie and Rose (DD).

OP posts:

Owletterocks · 12/01/2019 09:06

Hi op, I haven’t been through what you are going through but I have looked after babies following surgery for interrupted aortic arch. All cases are slightly different so the specialists will talk you through everything once the know the full picture. I just wanted to reassure you that the cardiac surgeons who will look after your little one have seen it all before and correcting these conditions is what they do. You will be in the best hands. Our hospital have cardiac liaison nurses too who will be there to support and educate you on the heart defect and the plan for surgery and recovery etc. They ensure that you are best prepared and fully informed. Take care of yourself and baby and I hope the results on Monday are reassuring.

Original poster

SueKatieRose · 12/01/2019 09:23

Thank you so much for replying to us, and for your kind words. X

OP posts:

Owletterocks · 12/01/2019 10:02

Also op, check out the British heart foundation site. They have a section on congenital heart disease and they may well have a support group, you might find someone there who has been through similar X

Daddypigssatnav · 13/01/2019 17:37

Heartline may also be useful. They have a forum for parents of children with CHD.

I absolutely second Owlette. The surgeons, doctors and nurses are amazing, especially in PICU.

angelopal · 13/01/2019 18:16

Sorry you are going through this. I cannot imagine how scary this is for you. However it's good that they have picked up the problems so they can put a plan in place.

Our DC1 had an interuppted aortic arch but it was not discovered before birth. We lost her suddenly at 4 days old and only found out after a post mortem. There was no chromosome issues in our case. Sadly just one of those things.

joanne1062 · 02/09/2020 16:33

@SueKatieRose

Hello,

Even if you have not been through this, but are able to send us a little of your hope and prayer, we would be so grateful.

Thank you,

Sue, Katie and Rose (DD).

Hello SueKatierose.

I know this is an old post put I'm hoping you can share your story?
My unborn baby as just been diagnosed with Interrupted aortic arch and a hole in the heart. We are currently waiting on the results of the Amnio, which is going to be a long 2 weeks.

GW1985 · 01/11/2020 15:41

@joanne1062 we have been diagnosed with the exact same thing for our unborn son and are awaiting the amnio results. The wait is traumatic, and its heart breaking.
Did you recieve your results. Please share your story if you feel up to it.
xx

GW1985 · 01/11/2020 15:41

Type B

joanne1062 · 01/11/2020 16:37

Hello,
Yes we received our results and he did have Digeorge syndrome. We were told that they couldn’t tell us the severity of the diagnosis. It’s a horrible wait and I googled and googled trying to find out what the chances of him having DiGeorges was and I think it was pretty high. I have my fingers crossed for you. We were offered genetic counselling and never accepted it but I would encourage you to consider accepting the counselling. Xx

joanne1062 · 04/01/2021 23:02

[quote GW1985]@joanne1062 we have been diagnosed with the exact same thing for our unborn son and are awaiting the amnio results. The wait is traumatic, and its heart breaking.
Did you recieve your results. Please share your story if you feel up to it.
xx[/quote]
How are things? Did your Amnio results show anything?

GW1985 · 05/01/2021 12:07

@joanne1062 Yes, he had DiGeorge syndrome. We are having genetics testing today. Its been a really traumatic journey for us. NHS have been incredible.

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