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Aortic Stenosis

Posted , 4 users are following.

Guest
Guest

My son was born with Aortic Stenosis. Throughout my pregnancy i had no idea that there was anything wrong with my baby as no checks in the later stages of my pregnancy were done. In the hours that followed my son’s birth he was monitored in the usual way. It was when my son was 15 hours old that my husband and I were told there was a problem with my son. The hospital where he was born did not have the best equipment to help with a diagnosis. So my son was shipped to the nearest hospital in a incubator for a echo scan the following day. It was here that it was discovered that he had aortic stenosis. We were given our options (one was a balloon catheter and the other was open heart surgery). We decided that we would go for the less intrusive option so we would always have the open heart surgery to fall back on should the first option not work. When my son was 6 days old he had his operation. The staffs were amazing at the hospital and explained everything that was happening. My son is now 13 months old and still having regular check ups to check that his heart has not tried to heal itself.

0 likes, 3 replies

3 Replies

  • Guest
    Guest

    Posted

    My son had a balloon procedure back in August. He has seen 4 consultants due to turnover of staff and each contradicts the other.

    The latest consultant is looking to operate again another balloon or the ross procedure (open heart).

    He is a lively chap and does not show any symptoms.

    He is classed as Mild to moderate @ a mean of 30mm MG?? Not sure if that is the correct wording.

    He only has 2 leaflets to his aortic valve; one doector says that is quite normal, the other says not the net relates it to aortic stenosis.....

    A great worry

  • salsta4324
    salsta4324

    Posted

    I too have a son with aortic stenosis that was not picked up until after birth which was a bit of a shock. I have to say that so far his condition has remained mild and no intervention has been required. He has regular check ups every six months. We have however been told he will need a balloon valvularplasty during childhood and a complete valve replacement in adulthood as his valve only has 2 leaves rather than 3 and is sticky. It can sometimes be almost easy to forget he has it but at the same time we always have it in the back of our minds that we need to look out for any signs of deterioration and that one day soon, his regular check will not be as good as it has been so far and the reality of our sons condition will hit us as intervention is required. He is 3 next month so it would be nice if it could be another couple of years yet but what will be will be!!
  • Caela1989
    Caela1989

    Posted

    I have a little boy 5 week old who was diagnosed last week with critical autic valve stenosis he is 5 week old so has managed 5 week struggling it came to last Saturday he could not breath ribs was going in head bobbing and squeezing with every breath took him to a and e were they tried to suss out what the diagnoses was didn't get very far and got out on children's ward .. We're late a doc tried to tell us he had broncilitis a form of chest infection they did X-ray and my boy had moved so it was twisted but doc said we won't do another because of the radioactivity the doc said baby's chest was clear now with broncilitis you would hear something on the chest I shouted the docs in and out of the room for hours telling them I know something isn't right .. I just got fobbed off ... They just carried on treating him for chest infection ... We went through the night next day my boy started to dramatically deteriorate I said to doc come on there's something not right he's in pain I started to get angry and rude with them I couldn't help it but still kept dobbin me off next min a different doc came in and have Harryson a once over due to the amount of meithering I did he checked chest couldn't hear anything he looked at me and said I'm not convinced that its broncilitis hallelujah I thought I could see Harryson couldn't cope any more doc felt the main pulse in Harrysons groin no sign he then said get another x ray done bloods has test so that's what they did Harryson was still deteriorating badly sooo scary never have a felt so angry scared and hurt I could see him slipping away from me slowly ...anyway results come back Harry couldn't take no more got rushed into icu eventually were they all started putting tubes everywhere needles drilled lines into his legs because his veins were collapsing they put iv in left arm in arterial vein and bent his arm so arterial line tried popping back out of the vein and skin half way up his arm could have burst his main artery please not this was Oldham hospital ... sad they had to sedate Harryson and inject him with all sorts of meds he later got send to Manchester hospital for echo scan then send straight to alder hey Liverpool diagnosed with critical aortic valve Stenosis graded 4.4 which was really bad I'm

    Not very good with all the number and things yet new to this so iv been reading up on it so 4.4 doesn't mean much to me yet... But cardiologist said it was bad .. He got taken in on the Tuesday for the catheter balloon to open valve went very well minor leakage brought him down to 2.27 I don't know what that means either but I know its better .. He is now 6 days after the catheter we got let home last night and I am petrified sad I have told a big amount of my story because Harrysons illness was missed and tingly treated for 24 hours an left to deteriorate there is much much more what went wrong and no thanks to the first doc my baby's still here I just want people to be aware of this and how docs aren't always right it's a mothers instinct that should be listened too as we know our children more than anyone iv lost faith in my local hospital .. And petrified if I ever end up there again ... I would love to beable to talk to someone who's little one has what mine has to get to know more iv been looking for a site like this all week because its nice to hear other people's success story's and how they feel its nice to know you are not alone .. This story may be a little all over the place ... Lack of sleep this week has all happens so quickly ... I can't help but bla

    Myself for this sad I'm trying to look for something to Blaim for my baby's illness .. I know its stupid .. But it can't be helped .. Would be lovely to hear off someone

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