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  1. #1
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    Default Heart Defect

    Hi all- first time poster to any kind of forum.

    We've just fuond out that our baby has a serious heart defect (AVSD) that will need to be operated on early in it's life. We've so far dodged the additional complicatations of chromosomal abmormalities and more complicated single chamber heart issues.

    We're from Canberra and will need to travel to Sydney for the birth (2 weeks before my due date and wait around). And I was wondering if anyone could share their stories of heart defects, delivering in Westmead hospital and getting through the birth and looking after the baby in the first few weeks after having gone through open heart surgery.

    I'm not sure how the birth will go, I'm not sure how breastfeeding will go, I'm not sure how long the recovery from the surgery for the baby will be and I don't know where we will live while this is all going on. So would love to hear how it's worked out for others.

    thanks

  2. #2
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    Hi! I wanted to post a quick reoly so I d didn't lose your thread
    My 8 month old daughter had chd... I'll post a reply later after she's in bed!!!

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  3. #3
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    Hi Nica,

    My daughter was born with an asd and vsd, the vsd had to be repaired surgically at 3 months old. Every bub is going to be different and my daughters chd is different from your bubs, but her birth was completely normal, her heart didn't start to affect her until about 8 weeks old. Around that time we had to start weaning down breastfeeding as it was tiring her out too much. By 10 weeks old we had stopped breastfeeding altogether and she was on high calorie formula feeds given to us by pmh. She also had an ng tube for night feeds around then. 10 weeks old was when she really started to struggle and we spent longer in hospital before the surgery than after- 3 weeks before, only 1 week after. She's now 2 and thriving- feel free to ask me anything.

  4. #4
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    As pp said every CHD kiddie is different.
    My daughter does have single ventricle physiology (hypoplastic right heart syndrome, tricuspid atresia, vsd and asd) so it's pretty complex. She has had 2 open heart surgeries and one cardiac catheter. A few other complications and she does have a rare genetic syndrome. That said.. she's doing awesome!!!
    Her birth was normal. .. she came out screaming her lungs out. ..the Dr's would have preferred a VB but I had failure to progress so ended up with a c section. But she was perfectly stable and you would never have known she had issues going on. After the birth and I was stitched up. . and she had an echocardiogram.. she latched and breastfed. She was great at it!! I only had issues at about 1 month old when she was in heart failure and was ready for her first surgery. That's when she needed a tube for feeds.. but ng tubes for feeds have only been necessary for surgery times. I have fought hard to allow Dr's not to put ng tubes in. .. As long as she put on weight and grew. My cardiologist was also happy to continue breastfeeding as long as she gained weight etc. But I wanted to know how much she was getting so I pumped and have her fortified ebm... personally I feel that if you want to give breastfeeding a go. . push hard to allow it to happen (obviously not to the detriment of bubs health).. I sometimes find tube feeds are the drs easy option. But that's just me.
    Each baby recovers differently from surgery. ..some breeze through. . some take a bit longer and I don't have experience with the particular defrct your lo has.
    Try to write down all your questions at each appointment and take time to write their answers. .. even if you have to ask them to stop a second. It can get overwhelming so I always had a notebook where I wrote everything down. Each appointment I write my questions. .. answers etc.
    I can imagine your mind must be in a whirl. ... It's so hard finding this out and you will have to travel. We did too. .. the hospital should be able to advise you on accommodation etc. You should get it subsidised. Have you contacted heartkids? You can find them on fb and there will be a support group for your state and the hospital.
    http://heartkids.org.au/m/
    Anyway. .. I've probably bombarded you!!! Please don't hesitate to ask me anything and if I can offer support in some way I will. Big hugs to you. XO
    I have a blog if you would like to read some of it.
    Www.iheartbabylove.wordpress.com

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  5. The Following 2 Users Say Thank You to Tamtam For This Useful Post:

    Nica80  (31-07-2013),Two Sweetpeas  (30-07-2013)

  6. #5
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    Ky is offline <--- Ruby, the most precious little red gem ever!
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    Yes, as the others have said, every child with CHD is very different.

    I lived in Nowra 5 ½ years ago when I had to travel to Westmead to have my little girl. She was born with HLHS and several other complications. Even just with the HLHS she was given a 30% chance of surviving through the required 3 stage surgery but sadly, the added complications (ASD, VSD, coarctication of the aorta, pulmonary and aortic stenosis and all veins too thin like cotton threads), meant that athough they fought very hard for her, she passed away at 9 days old after 4 open heart surgeries.

    So, although I cannot give you my experiences of a child recovering from surgery etc, I can give you my experiences as a parent in the situation of being away from home and support and going through the journey.

    Firstly, the staff at Westmead Public were incredible. They were happy to hold my meals so that I could be at childrens as often and as long as possible. They put me in a single room and kept my door closed so that I wasn't too distressed by hearing other who had their baby with them whilst mine was so far away struggling for her life. They were happy to call porters for me at all hours so that I could go and see her (I had a caesar, so needed a porter to wheel me there due to hospital rules).

    The staff in HDU and PICU are incredible! They never touched her without speaking to her first and telling her what they were about to do. Even after her first surgery when she was in a coma, they spoke to her constantly, sang to her, planned her first birthday party and were genuinely loving toward her. Her surgeon was gentle, willing to sit and explain things over and over until we understood and fought so hard and long for her.

    Even when she passed away, her surgeon and the nurse who was her main carer both shed a tear with me. We were not rushed through the process, instead given time to spend quietly with her until we had to hand her over for transport to the coroner.

    I stayed at Ronald McDonald House after I was discharged from Westmead Public. The staff there were lovely and caring and couldn't do enough to help us! My DH brought the kids to meet their sister (he had to work, so had gone home) and someone was available to babysit when Ruby started going downhill. When she passed away, they sent us home to the kids and didn't require us to clean our room or even pay our accommodation bill.

    The social worker we dealt with at Childrens was so lovely. Her name was Susan (not sure if she is still there) and she was an absolute rock for me. It was very lonely being there, signing paperwork allowing them to cut my prefect little girl open (I still feel a little guilty about doing that even though I know it was the right thing), and coping with all of the decisions that needed to be made. After Ruby passed away, she kept in touch with us for a couple of years, even after we moved to WA, just to check on how the kids were doing and how we were coping.

    They were all absolute gems and I can't complain about anything that happened. I am obviously devastated that Ruby passed away but I can't fault the loving treatment she received from everyone, even the police officer we had to hand her over to for transport to the coroner.

    I hope that what I have said can set your mind at ease at least as far as what to expect from the two hospitals.

    I wish you all the best in your journey and look forward to hearing of your baby's safe arrival and positive news with regard to surgeries etc.

  7. #6
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    Hi all- thanks so much for sharing your stories. And I'm so sorry to hear that your little one passed away, Ky. I can't imagine the heart break.

    Our news started out very bad (with a recommendation of termination at 19 weeks), but at every appointment seems to be getting more and more positive. And at the latest appointment it seems we've moved from 3 operations back down to one. Hopefully the news keeps moving in this direction!

    I'll be going back to Westmead in 4 weeks to see the cardiologist again and do all the obstetrician/nurse and booking-in processes. The baby does seem to be growing and moving lots which is nice and we're trying to focus on the positives and prepare as much as we can.

    The advice about the staff at westmead is reassuring, as is starting to write down some of my questions.

    I wish I had a crystal ball for the birth- but for now I guess we just go with it.

    Thanks again all

  8. #7
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    I've been wondering how you were going. Big hugs. That's great news you are down to one op!! Though still scary. I'm here if you need to talk or ask questions.

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  9. #8
    Ky's Avatar
    Ky is offline <--- Ruby, the most precious little red gem ever!
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    I'm so happy to hear that the news just keeps getting better and better!

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    Hi
    I'm in Braidwood, as people have said every child and CHD is different, they all react differently.
    My second born Zadc had Hypoplastic Left Heart Syndrome, he was born in the Royal Children's Hospital in Melbourne, we were from Sydney at the time our surgeon and cardiologist suggested we go to Melbourne. It was a normal birth with no complications, i even got to hold him before they took him away. He had first surgery at 2days old, after 12 days he passed away. his story can be read at the link below.
    My third born has a PDA not very serious as heart conditions go but scary for us, she was operated on in Westmead, get say anything bad about them, they were great.

    Hope your news keeps getting better. If you wanna chat pm me. Have you joined HeartKids?

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    Hi Nica80

    I'm currently 20 weeks pregnant and my scan revealed that the baby has an AVSD. I'm devastated. I now have to decide whether to terminate or keep going. There is no sign of chromosomal/genetic abnormalities. We've been told by a cardiologist that our baby will need open heart surgery at 3-6 months unless one of the holes closes up a bit and then surgery will be delayed for about a year or so. It would just be one surgery provided that everything goes ok. I just wanted to know whether you continued with your pregnancy and went through with the surgery for your baby and what the outcomes were? Any help you could give me would be greatly appreciated.
    Cheers,
    Emily


 

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