Huggies Forum

AVSD Children (Heart defects) Rss

my 3 year old daughter was born with a condition called atrio-ventricular septal defect.
It consisted of 2 holes in her heart, and a faulty valve.
Although now the holes have been patched up surgically, and they did what they could for the faulty valve, which is now just a leaky valve there are still possibilities that the patches could come away, and the valve could stop functioning.
Does anyone know any babies with this type of condition?
Im looking for someone to talk to about this, as i know no-one that has babies with any problems at all.
I love my 2 children more then anything, but i seem to feel like i have to be alot easier on the eldest because of her condition and that makes me feel horrible! i love them both so much, and i do stress that if i tell my 3yr old off that it may stress her, but i have trouble finding where the line needs to be drawn .. please help

my 3 year old daughter was born with a condition called atrio-ventricular septal defect.
It consisted of 2 holes in her heart, and a faulty valve.
Although now the holes have been patched up surgically, and they did what they could for the faulty valve, which is now just a leaky valve there are still possibilities that the patches could come away, and the valve could stop functioning.
Does anyone know any babies with this type of condition?
Im looking for someone to talk to about this, as i know no-one that has babies with any problems at all.
I love my 2 children more then anything, but i seem to feel like i have to be alot easier on the eldest because of her condition and that makes me feel horrible! i love them both so much, and i do stress that if i tell my 3yr old off that it may stress her, but i have trouble finding where the line needs to be drawn .. please help

mu son was simililar at birth...he had the valve fixed at 8 wks but didnt cope well with the op. He was on life support for 3 days and gradually got stronger and better....hes actually due for a review soon.due to the drugs he was given, it has affected his teeth and now at 15 mths is just starting to cut his first one...hopefully it wont be rotten... he also had 2 holes...one has closed but he still has the other one. He also had a cleft lip that we just got repaired...due to his heart condition hes often a mottly colour...he also is quite irritable...though Im not sure if thats just him or because he has days where he struggles more than others.... its very tough and testing having kids at the best of times, though its made harder when they have disabilities or medical issues. Be strong....its amazing how resiliant kids are. Best of luck.
My bubba had an AVSD which was repaired 9weeks ago (at 3.5mths old) smile She too has been left with leaky valves. Her surgery was long and complicated but the doctors seem happy with the repair. We're unsure what the leaky valves will mean for the future but her cardiologist says she 'shouldn't' need more surgery. She is currently still on oxygen and has a nasal gastric tube.
She is my only child at the moment and i've always told myself that even through she's had heart surgery and has downs syndrome that i will do my best to treat her like i would treat any other child. So far so good, but who knows how i'll act in the future when she's a few years old? :/

I've made alot of friends through our journey at the hospital and at the ronald mcdonald house, i know i wouldn't be able to do it alone. I can't imagine how u must feel at the moment.
If you ever need to vent or need someone to bounce ideas off you can contact me. My email is shann86@hotmail.com
Good luck with your two lil treasures smile

my 3 year old daughter was born with a condition called atrio-ventricular septal defect.
It consisted of 2 holes in her heart, and a faulty valve.
Although now the holes have been patched up surgically, and they did what they could for the faulty valve, which is now just a leaky valve there are still possibilities that the patches could come away, and the valve could stop functioning.
Does anyone know any babies with this type of condition?
Im looking for someone to talk to about this, as i know no-one that has babies with any problems at all.
I love my 2 children more then anything, but i seem to feel like i have to be alot easier on the eldest because of her condition and that makes me feel horrible! i love them both so much, and i do stress that if i tell my 3yr old off that it may stress her, but i have trouble finding where the line needs to be drawn .. please help
My son had a very large VSD diagnosed at 6 weeks but we had to wait until he was 10mnths old before they operated as they wanted the heart abit stronger. It has now being 3 mnths since the op and he is now my little gem. they too found a leaky valve but are pretty positive it will heal on its own and not need further surgery but it is always in the back of your mind. Between 6 wks and 10months I loved my child, but got very depressed, stressed, and just emotionally i felt like S** every day. some days i wished that i wouldnt wake up. it was hard to talk to anyone incase you said too much & i was scared he would be taken off me, so i battled by myself for far too long. he wouldn't self settle or able to be looked after by anyone else, because he got so upset & couldn't be consolled. Secretley how could i love a child yet in the back of my mind just hate my life as a first time mum soooo much. at 13mths i am struggling with eating & sleeping thru the night, because alot of rountine training couldnt be done successfully. "Bread of life" counselling I found great to talk to & heart children nz if you have registered with them should have a murmurs group you can contact & even a counsellor in your area. i am still on antidepressants and still struggle some days but go to the park or plunket or someplace where we can just chill out & thank god i am one of the lucky ones that got to leave as a family & not with an empty car seat.
take care of yourself because you are your childs lifeline. Your gp may be able to refer you some help also. I am also available for you to email.
lastminuteracing@clear.net.nz. hugs. fiona

My bubba had an AVSD which was repaired 9weeks ago (at 3.5mths old) smile She too has been left with leaky valves. Her surgery was long and complicated but the doctors seem happy with the repair. We're unsure what the leaky valves will mean for the future but her cardiologist says she 'shouldn't' need more surgery. She is currently still on oxygen and has a nasal gastric tube.
She is my only child at the moment and i've always told myself that even through she's had heart surgery and has downs syndrome that i will do my best to treat her like i would treat any other child. So far so good, but who knows how i'll act in the future when she's a few years old? :/

I've made alot of friends through our journey at the hospital and at the ronald mcdonald house, i know i wouldn't be able to do it alone. I can't imagine how u must feel at the moment.
If you ever need to vent or need someone to bounce ideas off you can contact me. My email is shann86@hotmail.com
Good luck with your two lil treasures smile

My childs doc told us she should have had down syndrome, but somehow she escaped that one, at much suprise to the doctors, she is thriving, and is well ahead of most children her age group, but she is oh so naughty, she is the most independant child ive ever met! i have another little girl too, and another on the way, the doctors say both them seem to be fine, nothing wrong there, but i worry.

My son had a very large VSD diagnosed at 6 weeks but we had to wait until he was 10mnths old before they operated as they wanted the heart abit stronger. It has now being 3 mnths since the op and he is now my little gem. they too found a leaky valve but are pretty positive it will heal on its own and not need further surgery but it is always in the back of your mind. Between 6 wks and 10months I loved my child, but got very depressed, stressed, and just emotionally i felt like S** every day. some days i wished that i wouldnt wake up. it was hard to talk to anyone incase you said too much & i was scared he would be taken off me, so i battled by myself for far too long. he wouldn't self settle or able to be looked after by anyone else, because he got so upset & couldn't be consolled. Secretley how could i love a child yet in the back of my mind just hate my life as a first time mum soooo much. at 13mths i am struggling with eating & sleeping thru the night, because alot of rountine training couldnt be done successfully. "Bread of life" counselling I found great to talk to & heart children nz if you have registered with them should have a murmurs group you can contact & even a counsellor in your area. i am still on antidepressants and still struggle some days but go to the park or plunket or someplace where we can just chill out & thank god i am one of the lucky ones that got to leave as a family & not with an empty car seat.
take care of yourself because you are your childs lifeline. Your gp may be able to refer you some help also. I am also available for you to email.
lastminuteracing@clear.net.nz. hugs. fiona

My past caught up with me and my daughters fathers family tried their hardest to get my child taken and unfortunately succeeded. they had her for the first six months, but i won her back, and i never stopped trying.
My daughter was diagnosed with AVSD when i was 5 months pregnant, so they caught it early and had an idea of what to do when she was born. at six months they operated.
She has thrived, and is doing well, and is due for a check up, so we will see what the docs think now, since its been a year since her last appointment, the doctors must think shes ok to leave her that long.. but if you ever need to tlk 2 me as well my email is korupt_duckling@live.com.au smile
i myself was born with a vsd that was diagnosed when i was only a few months old and had surgery a couple of days before my 1st b'day. my parents were told by the dr's that i would only live till 2 without surgery or 20 with surgery, i'm now 35 and had an echo (or ecg, one or the other!) last year and they couldn't even find where the hole might have been. when pregnant with my dd who is now 5 1/2, my gp kept and eye on both mine and bubs heart rate, and everything was fine. this time round, i'm due early next month, i've haven't been too worried, and the heart rate has been good the whole way through.

good luck and hope the leaky valve either repairs itself or the dr's can so more with it as bub gets older smile
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