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5 Years Ago Today

May 1, 2006

5 Years Ago Today…
It is time for me to remember again a day that would change my life forever. 5 years ago today at one week old Manie underwent a 12 hour surgery to save his life. I watch him today and Thank God that he is here and I will spend this day like I do all days celebrating all life and enjoying our time together.

I will hold him in my arms and hug him. I will be extra grateful because I can remember when I was not allowed to hug or hold him. I will listen to his voice even his cries and feel so lucky because I will remember what it was like not to hear his voice or his cries because of the giant tube shoved down his little throat and the fact that he was unconscious. We will joke and play today. We will laugh and be together. We will worry today about things like wearing green so we don’t get pinched!

I will spend my day with a smile on my face because I know 5 years ago today Instead of giving up and giving in Manie fought to be here. I can remember this day, even with all the pain and sadness that it was, and smile because out of the pain and the sadness came a the happiness that I call Manie. Thank you Manie for you determination and for being who you are I love you.
Happy St. Patty Day everyone. I hope you all feel as lucky as I do on this very special day!

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2 Comments leave one →
  1. Stephanie permalink
    April 4, 2009 3:13 am

    Hi, My son was also born with TGA and has been through much of the same stuff as Manie. I felt like I was reading about our life. Things like this are every parents worst nightmare. But Paxil did not cause this. I never took Paxil. Most every cardiologist I have ever spoken to believes TGA is hereditary. It seems to be so in our family. When something like this happens, we ask, “Why.” Sometimes crappy things in life JUST HAPPEN! TGA is NOT caused by drugs of any kind. It’s a CONGENITAL defect. My son is now 23 years old and will soon graduate from college. I can tell you that you will be better served if you just try your best to treat him like any other child and make him feel like it’s all going to be okay. Maybe it won’t be, but there is NO point in EVER making him feel any less hopeful or different because of all this. I can say these things to you because I KNOW exactly what you are going through. Negativity and self-pity have never had a place in our home and because of it, my son has grown into a positive, wonderful adult who doesn’t waste his time asking “Why.” I did and still worry ALOT! I am not the same person I was 23 years ago. You do your best and muddle through and deal with stuff life throws at you. And, you PRAY ALOT! Best of luck to Manie in the future–his is a special child indeed!

  2. Julie permalink
    April 4, 2009 1:15 pm

    Stephanie,Hi thank you for leaving a comment. It is so wonderful to hear that your son is doing so well! It is very encourageing to hear your story. As far as all the negitivity you read here on the blog… That is my way of sharing what life is like for Manie. As you know this is not a walk in the park or even a normal life for him. Especailly with collaterals on top of the leaky valve and high blood pressure. You can not judge how I raise my child by reading this blog. I encourage Manie to do everything that he can do. Manie is not a negitive child and he does what he has to do at the drs. and everywhere else without complaining. NO I do not treat him like he is a normal child because he is not. I watched him almost die. Having type D TGA we were very lucky he is alive today. I treat everyday like it is a gift from God. I am not a negitive person especailly around any of my children. I put this blog up to show what can happen if you take an SSRI when pregnant and what the “risk” look like when the risk come into reality.I was told the same generic answer when I had Manie. When doctors don’t know why a birth defect happens then that is what they are trained to say. “It is hereditary.” How many people in your family were born with TGA that would make the doctors tell you it is hereditary? GSK’s own documents proved that Paxil causes congenital birth defects such and TGA. Their documents from 16 years ago. They just did not tell anyone. So instead of them saying, hey Paxil causes TGA lets figure out why so we can help prevent this birth defect, they hid the info. Paxil causes TGA because of changes in the serotonin levels during development of the heart. (You, me and everyone else has serotonin in our bodies)Paxil changes serotonin levels. When your son was young how many children did you hear about or meet that had TGA? I have spoke with mother after mother after mother who wanted to thank me for the blog because they also took paxil too and their child was born with a TGA. If there was nothing too Paxil and TGA then hundreds of us would not be in the middle of litagation. It amazes me how many people do not want to become educated by doing research, but then want to hand out their opinion as it is fact. I have been doing this for over two years and I have read anything I can get my hands on. Believe me if it was hereditary my life would be much easier.Everyday I struggle with knowing that something I unknowingly did caused my son to have to go through this. The pain and torture I suffer in my mind is never going to be enough because I can not turn back the hands of time and change what happened. You have no idea what I go through and I am so happy that you don’t. So you see I am not looking to place blame on anyone, because I already do so day after day. That is a whole other blog. I am looking to warn other women so they will never have to feel this torture and precious innocent babies will never have to suffer. I have to warn others because the pharmacetical companies are still trying to push SSRI’s on women of childbearing years. Only now they won’t get in trouble for doing so because they add the statement “if the benefits outweigh the risk” take the drug. There are no benefits because these drugs have been proven, by their studies to be no better then a sugar pill. Yet these drugs cause all kinds of horrible side effects. I do pray everyday for Manie, for our family and that the drug companies will stop hurting and killing people. I also pray for people to educate themselves. Knowledge is power, but only if you have done the research yourself.

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