Coarctation of the Aorta

It has been confirmed that my DD2 has 'Coarctation of the Aorta' meaning 'Aortic Interruption' has been ruled out, she also has a hole in the lower part of her heart.

I was hoping to find some other parents that have been through the journey of having a newborn with Coarctation of the Aorta.

At this stage I am waiting for my next ultrasound in 7 weeks time (34 weeks) and we will be making a decision as to what we are going to do, meaning if baby looks happy and healthy we will allow here to come into this world when she is ready by VB but if she looks to be doing not so good then she will be arriving at 37-38 weeks by CS.

I really just want to prepare myself as much as possible with what to expect once she is born, I do have alot of knowledge now on the condition from a professional point of veiw but I would really love to get some more knowledge from a parents point of veiw.

The lovlely MistyFying has shared her birth stories which was great to read and get some understanding from a Mum although a little sad at the same time, it would be lovely to read some more.

Just stopping by to give you a big :hug:.

:hug: :hug: :hug: :hug:
from me too

me too hun, i hope someone can answer some questions for you

Thankyou everyone :hug:. I am pretty sure that I know everything that I need to know but it would still be nice to speak to other parents to see what their journey was like.

hi daintreedream

just found this thread, wondering how you are going? My LO was diagnosed with aortic stenosis, where the valve of the aorta did not develop correctly, this was only found after birth. She is now 10 wks and is doing well, however we have been told at some stage she will need to have a procedure done to help the blood flow through and relieve pressure from her heart but they cant tell us when that will be. could be in a few months or a few years.

hope you are and you lo are doing well

Hi alexsandra.

My DD is now 8 months old, she was delivered at 37+6 by CS but was doing really well at birth, she had open heart surgery at 6 days old to repair the hole in her heart and also the coarctation, we were lucky to go home 10 days after her surgery, we actually had a follow up apointment last week and her cardiologist is very happy with the repair and our appointments have been pushed out to 6 monthly which is fantastic. At this stage for us we do not have any reason for further surgery.

Have you managed to get in touch with anyone else who has the same condition, it helped me with the whole timeframe thing, that is something I struggled with most as my older DD has had a lengthy journey of her own that still continues although hers is not heart related.

Best of luck with your DD. There is one other heartkid (well his Mum) on here that I know of and we are here if you need us.

hi daintreedream

great news about your DD, i havent found anyone else with the same condition yet, i'm hoping to find a few more people who are going through or have gone through the same thing. It has been hard to come to terms with it esp since it was a big shock, it was almost missed only picked up by the pediatrician just before we left hospital she heard a heart murmur but told us it is prob nothing and will go away but to see the cardiologist just in case, lucky we went otherwise we would never have known as she is generally a healthy baby has no signs or symptoms.

i wish you and your little girls all the best

thanks