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  1. #1
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    Default Tetralogy of Fallot

    HI Everyone,

    We had our 20 week scan on Friday and our little baby boy has been diagnosed with TOF. We are in complete shock as neither my husband or I have any heart or congenital issues - is this the case for most of you?
    We are going for a specialist cardio scan tommorrow to find out the full severity of his condition. But we are so scared at the outcome.

    Has anyone experienced TOF with their child?

    Love to you all and you little ones xx

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  3. The Following User Says Thank You to onkybear For This Useful Post:

    mrsd12  (03-10-2012)

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    Hi. I understand some of what you are going through. I'm currently 31 weeks pregnant awaiting the arrival of our little girl. We got a diagnosis at our 20 week scan of tricuspid atresia/hypoplastic right heart syndrome, another complicated congenital heart defect. Not the same issues but I understand what you might be feeling etc only being about ten weeks into learning about this ourselves.
    Where are you going? I'm not sure where you are based. Happy to talk and chat, feel free to vent/pm me if you would like to talk or think I can help. It's a very shocking and upsetting diagnosis and scary. An organization called Heartkids offers support thought Australia. You might like to contact them. I've found them good although I don't think their support really comes up until bub is born.
    I found allowing myself to grieve for the pregnancy really important. Just in that some/all of the joy about expecting a baby is taken away and replaced with fear and anxiety. Well at least that's how I felt. And still do. We started (DH and I) a journal to our daughter to embrace the life we already have and for memories early on and this had been great. Stuck in pictures of from scans and belly bumps and written comments about the pregnancy. Just silly things like my cravings or how much she's moving or picking her name.
    Anyway, I'm rambling now but I just wanted to reply and offer a hug, my listening ear if you would like even though its not the same diagnosis.

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    Hi Tamtam,

    Thanks so much for your kind message, I am so sure that your little angel will be just fine, but it is such a scary thing to hear that everything is not OK.

    It would be lovely to chat/PM, I don't know anyone that has been through something like this. I am based in Sydney, where are you?


  6. #5
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    Hi. I'm on the Gold Coast but we are going to the Mater in Brisbane.
    I tried to pm you but I can't. I think maybe you haven't been a member long enough?
    I also do not know anyone who has been through this. I contacted Heartkids in QLD and actually met up with a person who's son has a different heart condition. It's hard, because these things are rare and it's difficult finding information and support from those around us.

    I see you are going for a fetal echocardiogram tomorrow? Don't worry too much about the scan. We had three all up in three days.... and it was the same story each time. I have to say I didn't really lose it (emotionally) until about three or four weeks after the diagnosis. Both our babies have a cyanotic type problem. Have you googled much? People tell you not to do that, but I did! I sort of felt knowledge was power. haha. Then I knew all the questions I wanted to ask the fetal cardiologist. I don't know how it works in Sydney... but here's a sort of run down of what happened with us, not sure if it's helpful.
    Initial diagnosis at morph scan, had three scans to confirm over three days.
    After this, the fetal cardiologist met with us for over an hour and explained everything and the outlook and prognosis. He was very good.
    We were then assigned a social worker and a cardiac care specialist through the Mater hopsital who check in on us and call us.
    After that we've had four weeks to digest everything before next scan (24 weeks along) - which was a growth scan. (My bub is a small one too - concerns over arm and leg length).
    28 Weeks - Fetal echocardiogram plus a growth scan.
    30 weeks - growth scan
    32 weeks - growth scan
    34 weeks - growth scan plus fetal echocardiogram. On this day we will attend a meeting called a multidisciplinary meeting - involving all the doctors to do with my care and the baby's care.
    I have no idea what happens after this!!!!
    I hope that doesn't scare you. In all honesty - the follow up scan you will have tomorrow will hopefully give you more clarity about everything.
    How are you feeling? Have you bought much in preparation for bub? Is this your first? I guess I'm asking because there's a myriad of emotions you are probably going through, both you and your husband are facing a big change now.

    I don't think you can pm just yet on bub hub... but I'm happy to talk over email.

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    http://heartkids.org.au

    Here's a link to Heartkids... you can click on your state or the other states... you may find wonderfully uplifting stories about TOF here too. I scoured this site along with many others reading many great stories.

    There is a forum here for 'heart mum's.... but I think it's a bit 'dead'... as I posted but didn't get much back.

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    Thanks for the link Tamtam, I have reached out to the NSW team, so hopefully I can meet some local families that are going through a similar process, the more support we can get the better...thanks for all the information on your pregnancy, wow seems like so much going on, but you are in the best of hands. You say that your other child has a similar condition? Does this increase the chance for any more babies that you have?

    I just don't seem to be able to clear my mind and focus on one positive thought, you are right there are so many emotions to work through right now and so many unknowns.

    Please email me on sarah.dwyer@optus.com.au

    Thanks!

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    Hi MrsD.... hope the scan went okay today - well, as well as something like that could go.
    I sent you an email from my email today. I hope you got it.
    I hope you've been kind to yourself today.
    Hugs.

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    Hello yes my now 4 and a half year old was diagnosed with it when he was 8 weeks old he had corrective surgery when he was 5 and a half months old. His operation was at the mater it took 8 hrs all up the doctors and nurses there are fantastic especially in the picu and he goes there for checkups every six months. So far they have all been great apart from his last one where his pulmonary artery has narrowed off abit but apart from that he is a very healthy 4 year old that apart from getting tired fast can do everything his brothers do. There is no history of heart defects in our family either it really came as the biggest shock to all of us. Big hugs and good luck with everything.

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    Great - thanks Tamtam, it would have gone to my work address, so will check when I get back to work on Monday I also heard from the heart kids in NSW, so thats great - looking forward to meeting some families in a similar position. the scan was OK, it just confirmed the diagnosis, so now we have the detailed echo booked in for Tuesday.

    Mumofone - that is so inspiring to hear that Jake is doing great was it not diagnosed before he was born? What a strong little warrior he is, when you say Mater do you mean Sydney?

    tamtam this is our first and we have began buying all the exciting nursery stuff

    feeling positive today, thank you so much for all your kind words


 

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