Severe Aortic stenosis

[NeedyScroller]

Help, advice and experiences please 🙏🏻🤞🏻

my son has always suffered with ‘seasonal’ asthma and we spend many many times at the doctors throughout the year. Last November a nurse noticed a heart murmur and referred him to be seen at the hospital. Fast forward to Friday and he finally had his appointment. Unfortunately the consultant found he had severe aortic stenosis with a bicuspid aortic valve. This really shocked me as I was told by so many professionals that this was just routine and would most likely come up as nothing. He is 8 and I’m so confused that it has never been picked up before during his doctor appointment and ‘asthma reviews’ at this point I’d be really surprised if he even has asthma!

the consultant was really surprised to learn he has never had any symptoms with how severe it is. My son went for an ecg and xray that day and I was told I’d hear from them within 2 weeks and that all the photos/videos from the echo would be at a board meeting this week with other professionals to decide what treatment (surgery) would be best.

I’ve received a phone call today asking to take him in to have an ecg monitor fitted for 24 hours on Sunday and I just think everything is moving so so fast (which I am super grateful for) but it’s making me anxious that this is more serious that they’ve said and it’s a rush to get him in! Does anyone have any experience with aortic stenosis and is this normal to be rushing everything? sorry for the long post, one very anxious frantic mum x

I’m really really sorry, I know this is not what you want to hear right this moment..but aortic stenosis is serious. I used to work as a structural heart clinical nurse specialist, but in adult services. A bicuspid aortic valve is a congenital condition and to have severe AS at such a young age is significant. Bicuspid aortic valves do become stiffened much earlier than tricuspid valves but this is usually later in life. It sounds like the cardiology team are doing all the right things. They have performed an echocardiogram and ECG. They have had a multi disciplinary team meeting and they have referred him for a 24 hr ECG to check his heart rhythm. The likelihood is he’s probably going to need surgery to replace his valve, but the timing of that will depend on severity, symptoms and any significant red flags such as fainting, chest pain, how well the left chamber of his heart is pumping etc. They might want to want to hold off on surgery for as long as possible and watchfully wait, but it very much depends. He might need a heart MRI if they are worried about anything else. And they might screen your family by referring you to the inherited cardiac conditions team, depends on your local set up.

I’m so sorry you’re going through this and for your little boy. You are doing immensely well. Everything is in the early stages, but it sounds like you’re in good hands!