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atrioventicular canal defect

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  • pg02068
    My son, Kyle, was born 2/10/04 & was just recently diagnosed as having partial atrioventricular canal defect. Cardiologist says he will need to have surgery
    Message 1 of 3 , May 28, 2004
      My son, Kyle, was born 2/10/04 & was just recently diagnosed as
      having partial atrioventricular canal defect. Cardiologist says he
      will need to have surgery when he is about 4 or 5. Maybe sooner if he
      starts failing. Anyone I can talk to out there? I can't imagine how
      hard the surgery is to go thru for a parent. It scares me to think
      about it. I love to here from someone.
    • spencer davis
      Hi, my names Cindy, mother to molly 4-28-99, she was born with asd, vsd, avc, atrioventricular heart defect, and hypoplastic left heart syndrome, which all
      Message 2 of 3 , May 28, 2004
        Hi, my names Cindy, mother to molly 4-28-99, she was born with asd, vsd, avc, atrioventricular heart defect, and hypoplastic left heart syndrome, which all wasnt dected until she was five weeks old, her twin brother was fine. She's had 4 open hearts before she was four, well techinally 5 but i dont really count the extra one, cuz it was done within 24 hours of the first one, when her chest was still left open. She has a mic-key tube ( tube in her stomache) to sustain her. So i guess u could say we've been down the surgery road enuff times we dont need the map anymore. I take her to boston childrens hosptial ( and yes they are awesome there). If you have any questions or just wanna chat, please feel free to contact me at this address or at synsyn67@... and i have Instant Messenger for both. I know right now alot may seem really scary, but just take a deep breath, and have faith in your child, threw all this i have learned that molly is the strongest person i know on
        earth. Please contact me if u need to. Cindy


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      • Wendy Saintsing
        Hi Cindy. Thank you for the hope. My name is Wendy. Kyle was born 2/10/04. He is my Angel. I was blessed by not finding out he has partial AVCD until 4/27/04.
        Message 3 of 3 , May 31, 2004
          Hi Cindy. Thank you for the hope. My name is Wendy. Kyle was born 2/10/04. He is my Angel. I was blessed by not finding out he has partial AVCD until 4/27/04. I say blessed because I had over 2 months to know & love him as a normal child. Which I understand from the cardiologist he basically is normal (he can walk, run, etc) but had I known when he was born that he has a heart defect, I prob would have acted like he was an egg about to break. We go to the cardi tomorrow afternoon.
          I am very scared, but I have mostly swallowed the fear. I have a 9 yr old son (Shawn) who is very afraid that the brother he has wanted for yrs is going to die. I reassure him that Kyle will (hopefully) not need surgery until 4 or 5 yrs old & the cardi says the outcomes are almost 100% now. The surgery part is so scary to me, that although I know it will happen, I can't let myself think about it. It sounds like you have had a much more rough road than what I will face. Kyle will (hopefully) only have to need one surgery.
          How scary is the surgery? What is the recuperation time like?
          We live in Spencer, MA so Kyle will go to Boston Children's also. He is being seen now by Dr. Pollack at UMass in Worcester. I hear she is very good, but that UMass doesn't do the surgeries, you have to go to Boston. I want to get a second opinion anyway.
          Thank you again for the support. My other email is saintsingl@... if you want to send directly to me. Wendy

          spencer davis <broodofsin@...> wrote:
          Hi, my names Cindy, mother to molly 4-28-99, she was born with asd, vsd, avc, atrioventricular heart defect, and hypoplastic left heart syndrome, which all wasnt dected until she was five weeks old, her twin brother was fine. She's had 4 open hearts before she was four, well techinally 5 but i dont really count the extra one, cuz it was done within 24 hours of the first one, when her chest was still left open. She has a mic-key tube ( tube in her stomache) to sustain her. So i guess u could say we've been down the surgery road enuff times we dont need the map anymore. I take her to boston childrens hosptial ( and yes they are awesome there). If you have any questions or just wanna chat, please feel free to contact me at this address or at synsyn67@... and i have Instant Messenger for both. I know right now alot may seem really scary, but just take a deep breath, and have faith in your child, threw all this i have learned that molly is the strongest person i know on
          earth. Please contact me if u need to. Cindy


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