Supporting young children and heart issues

[MummaSoap]

Hi All, I hope everyone is doing ok?

So last Thursday, my two older children went together to a heart clinic (it was meant to be all 3 but my youngest has “shickenpox” - her words 😂😍).

My eldest has a very small PDA (patent ductus arteriosus) and a z number of 2.8 and so at the moment the consultant doesn’t want to diagnose him with DCM (dilated cardiomyopathy) and is happy to monitor for now.

My second child had her echo too and although her measurements and z number are nicely within the normal range, her heart structure is very similar to her brother’s.

I’m petrified that my youngest is also going to have similar results and I know, I know that I need to remain positive and not jump without having all the facts but the not knowing is gnawing away at me like a mouse with some cheese!

Has anyone here got children or has had a heart condition since childhood? How did they/you cope? At what age was medication introduced and how are they/you doing now?

If you’ve got this far then thank you for taking the time to read my post! 🙏

Best wishes

Soap 🧼

[JeremiahObadiah]

Your worries and fears are totally natural. I cannot add anything from my own experience apart from trying to reassure you that whilst it’s information you don’t want , knowing is when accurate treatment can be implemented. So long term it is important and beneficial even if you would rather cover your eyes and ears and not know.

I hope someone will read and answer your post who can help with more pertinent experiences .

[MummaSoap in reply to JeremiahObadiah]

Hi JeremiahObadiah

Thank you for your kind reply!

I do feel comforted by your words and I’m very much a believer that knowledge is power so I agree about the potential future planning of it all.

I really appreciate you taking the time to respond.

Best wishes

Soap 🧼

[Jules2021]

HiMy son was diagnosed with a bicuspid aortic valve when he was 1 year old after gp heard a murmur when he had a chest infection. I was absolutely devastated. He had yearly echos intil he was 12 then the regurgitation went from mild to moderate. Echos then every 9months. At 14 the regurgitation went to moderate to severe so echos every 6 months along with mri and stress test. He doesnt seem to worry about it at all but i do get very anxious thinking about it now and then.

He is now nearly 16 and at 5ft7 is able to have an adult sized valve fitted when needed which is a good thing according to the consultant lol

The way I look at it is that the medical team know its there and keep a close eye on it. They will replace it when they see his heart is starting to struggle whereas I didnt know anything was wrong with me until I had a heart attack.

Jules x

[MummaSoap in reply to Jules2021]

Hi Jules2021

Gosh, that sounds like quite the journey of monitoring that you’re both on!

I can kind of understand that he seems less phased though because I don’t really worry about myself or my own condition but I’m few very anxious about my little ones. I guess when you bring someone into the world you want all the best of life for them and it can render you feeling quite helpless when you aren’t in a position to just make it better.

Not that my children have any awareness at this point in time of what may await them. I don’t see the point with no restrictions on them - I want them to live normal lives 😁

Thank you very much for taking the time to reply to me, I really appreciate it!

Sending best wishes to both you and your son.

Soap 🧼

[HHH2017]

Hi, what a huge worry for you. As a mum of children with other medical needs I feel your pain.

I havecared for a girl with Down Syndrome for 6 years now. She had open heart surgery as a baby and has recently had it repeated aged 12.

She is amazing! Copes wonderfully with life and has bags of energy most of the time. She swims REALLY well but can tire early on a long walk. Her recovery from surgery has been half the time of an adults 💪🏽

You are bound to worry but our experience is that heart care for children is EXCELLENT her family have nothing but praise for all involved in her care. I hope your children stay well and remain closely monitored to help reassure you all of a positive future.

[Deejay62]

Hi, I had Supra ventricular tachycardia all my life. I wasn’t diagnosed with Dilated Cardiomyopathy until I was 43 when my tachycardia became continuous and I couldn’t breathe, then I had an echo, chest Xray, ecg and angiogram which diagnosed DCM and heart failure.

As a child I carried on as normal although doing athletics I always found at the end I struggled to breathe. I played netball and hockey and I enjoyed them and had no problems. I was blissfully unaware anything was wrong until age 15 and even after a tachycardia event I still continued as normal.

In my 30s I remember my mum saying her millionaire cousin who lived in Surrey had died from dilated cardiomyopathy and it still never sunk in.

Children are very resilient, but hopefully it wont affect them, but medicines are getting better all the time. It’s natural for you to worry but it’s not your fault, it might have been passed down to you.

My adult children aren’t interested in finding out but maybe my grandchildren might want to.

[Lowerfield_no_more]

Stay positive Soap. You have the benefit of diagnoses on your children, rather than nothing, which should mean they receive the level of care and attention necessary from an early age, and as medical science progresses the situation will improve for them.