Heart Children roll call

I don't know too much about a PDA either High9 but yes you are in the right place. Jake had a PDA but it was the minor issue compared to the other problems. They fixed it while he was in surgery for his other defects. I think they usually either close up on their own (all bubs have that hole when born and it usually closes in a few days) or they do it in the cath lab - still scary but at least not open heart surgery. I'd assume with your daughter being older that its not closing on its own. Wonder why they didnt pick it up sooner. Does she have any symptoms apart from the murmur?

Limochick - good luck with the surgery!!
And thanks re DD's tear duct surgery -- she had it done 7 months ago and is in the unlucky 2% who it didn't work for! I'm not sure how long the waitlist is right now but it was 6 months last time she went in, and 1 month when I had something done recently. Happy to wait til after Xmas to be honest!
When I said heart failure - that was the medical term for what was happening - but he didn't go blue or stop breathing so not that sort of scary. I had to drive straight to starship from the GP, but no ambulance or anything. It was probably more scary the next day when we found out what was really the problem!

Edited by Nikki

Hi people,

I have just found this forum, I have a 6 month old heart baby. She has Truncus arteriosus repaired at 8 days old. She also has other complications caused by her heart condition which are, ironically, more concerning now than her heart!

We had a pretty rough time for the first few months like most of you guys from what I have been reading. Nice to find others who have been through the similar things with surgery, Starship stays, weight gain etc.

Hope all your kiddies are doing great!!

I started a facebook group and joined those of you who are on my friends list but if you want to join just let me know my facebook name is Alicia Gestro

Nikki - bummer about the 6month waiting list Wow that study would be quite interesting. Do they think early surgeries can affect them??

hi web111 sorry to hear about your little girl

I have to start the organising of what we need to take to starship and what stays at home for the inlaws to bring up, I can't wait lol!!! Will deffinetly all let you know how Quin gets on.

Hi sorry forgot to come back! Umm well the heart murmur wasn't picked up until she went to A&E about 3-4 months ago now but when we saw a gp at our local clinic he thought it sounded in a different area to where A&E said the murmur was so he wasn't sure if he was imagining it or not but a second opinion 2 weeks later from another GP at our local clinic agreed with the doc from A&E. However almost 2 weeks ago now that paed said it sounded different to the kids he gets in with heart murmurs. We got a follow up letter from our appointment, still waiting for an ultrasound and echo but won't know much until then but if it is PDA then they will most likely do catheter insertion to plug it up. She's 20 months. The letter did mention open heart surgery but only as a last resort.

Wendy I've just sent a friend request so I can try to add you to the group. :)

high9 - my sister used to work in the cath lab :) Not sure what would have happened if they hadn't found it then - I assume she would start to show signs of going downhill eventually. Jakes was fixed at 6wks as he was having surgery anyway so I didn't know too much about it apart from what they told me (mentioned above). Hopefully you will get an appt date soon.

Limochick - yep theres a 30% chance of brain damage having their hearts stopped for open heart surgery at that age!! When they say damage they mean "brain changes" and not all of it is serious or even will affect them at all. But developmental delays are normal and we were warned of it. Jake was fine and did everything early-ish (rolled at 12wks, crawled at 6mths, pulled up and walked around furniture at 7mths, pushing along toys at 8mths, proper walking 3 days after his b'day, talked really early etc). He had a check as part of the study at 2yrs and scored ahead of his age in all the areas and well ahead in a couple of areas, so that was a huge relief. His brain also showed very little change (MRI before / after and monitored during surgery). Its been a bit of a pain - taking him back for appts etc (the sedation at 4 months for follow-up MRI was HORRIBLE!!) - but if it helps some other little bubbas I'm all for it. Being a scientist how could I say no?!?

If any of you have children with slight developmental delay and are in the auckland area and want tickets for the plays at greenlane that I get through our special needs group or the Special kids area at the Farmers xmas parade or the special kids xmas party please email me suemcgehan@ihug.co.nz or if you want our special needs newsletter

Hey Bee, sorry to scare you with the brain damage talk .. I forgot you were here and how scarey it all is! I freaked at that part when they told me the night before his op. also freaked at the blood transfusion happening with surgery (something I wasn't keen on and hadn't considered would be needed) and also freaked that they gave my 3wk old bubba a dummy when I was anti! But I had no option but to deal with it all, as it was happening whether I liked it or not.

Thanks Limochick -- yeah I was stoked with Jakes results even though we kinda knew he was doing well it was nice to have someone else tell us. I'm assuming they will have to sedate them if they won't stay still?? Don't really want to go through that again unnecessarily but I know the research is for a good cause!!

Thanks Suzie! We got offered tickets for the Xmas party last year thru heart babies (couldn't make it though), but haven't heard anything this year. when is it?

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Edited by Bee_ - 26 July 2016 at 10:40am

Merry Christmas everyone!!!

The only Becki Horgan I found has a girl with a baby in the pic (and a guy) - is that you? I'm Nikki Davy if you want to add me and I can add you to the group. Good luck for Jan hun!!

Hi everyone, sorry for some reason my notification of comments in this topic stopped working :( 

Merry Christmas everyone! 

Hi to the newbies :)

Can someone please add me to the group too?  :)  Angelina Newman

Wow the brain damage is new information for me.....I don't remember having that mentioned to us......or is that not a risk as he had his open heart surgery at 4 1/2 months?