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any heart mummys around?(25 Posts)
i have 2 kids - almost 4 (boy) and almost 2 (girl).
Girl was born with heart deffect. I was wondering - is anyone here who has child/ren with heart problems?
My DS, 3.9, was diagnosed with an Aortic stenosis at about 9mths. So far he hasn't needed any treatment and we're on annual reviews to montior his heart. He will need the valve stretched at some point and will eventually need the valve replaced but it's all a case of when. At the moment he shows no symptoms and lives life to the full. It's still very stressful though, isn't it? What condition does your DD have?
What condition has your DD been diagnosed with?
DD3 was diagnosed with VSD at 6 weeks old. We started with 3 monthly apps with the royal Brom with the view of surgery near her 5 birthday. DD is now nearly 4 and her hole has shrunk so no surgery
Horribly stressful and such a worry when she caught colds etc, we had her on a high fat diet which helped.
My dd has complex CHD. She has ALCAPA, PS, leaky mitral, ischaemic LV and hypokinesia.
My DD (2) was diagnosed with ASD & VSD (2 holes) and pulmonary stenosis at 3 days old.Amazingly all 3 had resolved themselves by the time she was 6 months old and she was signed off by her cardiac consultant last summer. She didn't require any treatment for them just regular scans.
Hope your DD is doing well x
DS2 (18 months) had a coarctation of the aorta (operated on at 10 days old), aortic stenosis and bicuspid valve. He's doing really well and hopefully won't need surgery for a while yet.
Hope all the other heart babies and children are doing well.
hey, come and join us on www.heartline.org.uk lots of heart parents there!
My son was born with transposition of the greater arteries. He had surgery at 3 weeks to fix that a close a few holes. He's now 8 mo and doing great! He had the surgery in southampton and the docs and nurses were wonderful. I hope they can stay open.
Dd2 has mild pulmonary stenosis. Always symptomless but we did have a bit of a panic last autumn when her chest was hurting her. Thankfully unrelated to the defect which is now likely not to cause her any issue - though tattoos (good) and ear piercing (bad) are both out for her because of the endocarditis risk.
<waves to NorthernLurker> - glad things have settled down.
And hello wellbegun - we must know each other in another guise
My son had Kawasaki disease as a toddler that has given him damage to his coronary arteries, he is seen regulary by the cardiolgist at the moment to keep an eye on things.
I was also born with a prolapsed mitral valve and my mum had surgery at the age of 70 on her bicuspid Aortic valve
DD has severe aortic senosis, severe coarctation of the aorta, 'hole' in the heart, duct wont close - just getting bigger. She had her op when she was 3 weeks old (combination of all of this - it wasnt a question - should we or not, we had to sign concent form on a way to a theatre). She had her valve and 'hole' puthed up (sorry for very technical term!), duct closed and they open aorta a bit. We were in royal brom too. Now we going every 6 months - they said she might need her valve replacement but she is exceptable atm so we just waiting ...
I was trying to go on heartline when we just got home, but after reading first page or 2 i couldnt stop crying. I decided to give a miss for a few months (was very painful) and never went back - i think i will give another go!
Is this hard? I cant discribe how difficult it is! One of the heart mums said on facebook- it made me stronger but put me on my knees for the rest of my life.
Roxy - it gets easier. dd is 18 now and although we're still going to the hospital and she's still on meds (she's not 'fixable') things are less scary when they know how they feel and can tell you how they feel. You still worry though.
We've had some tough times on Heartline - I've been there many years - we've had some losses and when you're fresh out of hospital that can be hard to read about. But there's lots of support too so give it another go when you feel able.
Dd (10) had a VSD which was fixed by open heart at 18 months.
She is fine now
DS (3) had a medium sized VSD, diagnosed at 3 days, which was repaired by open heart at 21 months, as close proximity to aortic valve was causing minor complications which, if left, could have been more of a problem later on (surgery performed by the wonderful Olivier Ghez at RBH). Very upsetting and stressful at the time, but he is absolutely fine now and should be for the foreseeable future.
Hugs and fingers crossed for others x
Good old Oliver Ghez!!!! He did our open heart surgery too! It was 18 months ago but my mum still praying for him every day!
When dd had her op, same day another boy had his op in great ormond street. He had chd. on a day we came home, his parents had to turn his life support machine off.
Quick question - how do you explaine to siblings about condition? how do you tell them that your brother/sister are not very well? and do you trying to treat as 'normal' as possible or do you make point that they are different?
between mine kids 2 years difference and i find quite difficult to explain (without making fuss) to my son, but same time i dont want people (and family) to wrap her in cotton wool!
Not sure if I really belong here or not but would like to pick your brains if possible?
DS2 (14 months) has a something called an Aberrant Right Subclavian Artery. To be honest as yet I don't completely understand it as it's very early days...was picked up during a Barium Swallow due to suspected Laryngomalacia-but as I understand it one of the arteries from his heart is going the wrong way and has formed a loop around his esophogus sos it needs to be litigated as it's causing a narrowing and problems when he breathes and swallows.
Our local hospital have said straight off it would be Great Ormond Street which is probably our nearest "big" hospital (we are on norfolk/suffolk border) but just wondered if there is anyone or anywhere better. We are waiting for a more detailed echo so we're in limbo at the moment...it's obviously not life threatening but still very scary.
My daughter was diagnosed with fallots tetralogy at 4 months. She had a shunt to keep her going until she was old enough to have a major op at 2 and a half to correct various defects. At 16 she had her pulmonary valve replaced. She is now nearly 23 and has yearly check ups. Her condition has not restricted her life at all although sports have not been her strong point. She has travelled in India, Thailand and Australia and has lived life to the full. She has to make sure she gets enough sleep though and look after herself. Hopefully her pulmonary valve will keep going for a long time yet and with any luck can be replaced by keyhole (which is being done at the moment I believe).
So glad to have found this thread... I am 6 months pregnant and the sonographer picked up anomolies in our 22 week scan. Baby has a VSD and Transposition of the Greater Arteries so I know we have a lot of stress and worry heading our way in June. I'll be induced early at the Royal Bristol Children's Hospital - does anyone have any experience of the team there? - with open heart at around 10 days. Everyone has a friend of a friend of their sister-in-law's auntie who had a baby with heart problems 'and is fine now' but it's lovely to see positive stories from people with first-hand experience xxx
Just want to say... GOSH has been wonderful for our son ( now 14!) He has had lots of operations there, not just for his heart. ( Tricuspid atresia, TGA, Pulmonary stenosis, various holes, tumour age two, complex gastro, brittle bones and a fine collection of consultants ...!!) If you want a book to explain a bit about having a heart sibling try "Rosie goes Red Violet goes blue" from Children's heart federation... it doesn't go into too much detail but has a nice rhythm and relevant pictures ( not a bunny with a sore ear, but oxygen and sats monitors etc in a friendly manner)
Good luck everyone.
Morninghasbroken my son was born with transposition of the greater arteries. It wasn't detected until he was a few hours old. At 3 wks he had his surgery at southampton. He's now a Very active 9 mo old. It's much harder on the parents than the baby. S/he will heal really quickly. ((hugs))
We had our surgery performed by Oliver Ghez as well - last week! Royal Brompton and all their staff are amazing! My daughter (4yrs) had a incomplete AVSD with dysmorphic mitral valve diagnosed at 2 years - watchful monitoring until recently then repair of the ASD and mitral valve but her heart still remains quite abnormal - her mitral valve is a mix between parachute and double orifice and may or may not last her until adult hood
MHB - I have a contact who has experience of care at Bristol, unfortunately her baby was extremely poorly with an almost unknown condition and passed away BUT she was unfailingly positive about the care and support she got there and said it was second to none in her experience. Heartline do a great book on CHD which has nearly all conditions clearly explained and what to expect from hospital, post-natal care etc, PM me if you want details.
ihearttc - you are able to ask for 2nd opinions at other large hospitals providing childrens cardiac services - Royal Brompton and the Evelina being 2 of the main ones in London
From my experience my little girl seems to have bounced back from OHS remarkably well - definitely a lot harder for us I think - she seems to have taken it absolutely in her stride.
Kabby really glad to hear that your DD coped really well with her surgery. I'm sure it must be harder for us parents.
How are we all doing? x
I haven't been here for a while - we had a lots of ups and downs, then - ups, now - downs. Was very busy with mine 2 kids, hospitals appointments and work.
How's your little ones (or not so little) doing?
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