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Open heart Surgery on an infant, any moms who have dealt with this and anyone who has dealt with the condition

My daughter was on Friday, morning and there was a window of time where she was ok then a few test came back irregular, then she couldnt hold her o2 blood level. They did a bit of tests ultrasounds and so on, the found she has Transposition of the Great Arteries(TGA). They rushed her from our hospital to the local childrens hospital. (I was discharged 26 hours later) They plan to do surgery Tuesday. I was hoping to hear all ends of the spectrum on this to have a better understanding of what to expect. The fact that this is one in onehundred makes finding someone with common ground difficult. Any stories or experiences of moms(or dads) of infants in open heart surgery and any particular to TGA would be greatly appreciated. I know each child is different but i would like to know how long they were in the hospital and if there were any future procedures(they dont anticipate her needing them but curious about others, and i know that they cant predict the future) Thank you in advance Sorry she was born on friday. i left out born in the first sentence.

Public Comments

1. I don't mean to waste your time because I know nothing about this but as a mother of two this breaks my heart. I want you to know that I will be sending positive vibes her way on Tuesday and I hope everything turns out great for you and your family. I will keep her in my prayers! If you don't mind what is her name?
2. If at all possible, get your child to TCH. http://www.texaschildrenshospital.org/carecenters/Heart/Default.aspx
3. First of all, let me say- I'm so sorry you are having to go through this. I myself went through my first born son's open heart surgery a little over a year ago. I hope to GOD that your baby girl can survive this! (my son did not) All I can do is tell you to NEVER leave her side and be sure they triple check ANY blood they give her in a transfusion. (the wrong blood type is what killed my son) I will keep you and your baby girl in my prayers. If you need a friend I am here. sunmoonsstars21 @yahoo of course Just let me know if you need me Sarah
4. Oh dear! My prayers go out to you and your daughter. I can just imagine this is heart wrenching for you... but it HAS to be done right? I am not familiary with this condition, but it sounds like if she can stabilize her o2 levels, it is an emergent situation and has to be done. As mothers we have to give our babies the best chance possible for a normal healthy life and if this is her only shot at it... I had a friend who had a little girl last Dec. I am not sure of the exact name of what she had, but one of the chambers in her heart wasnt formed right. They did open heart surgery when she was 10 days old. She did great until the last 30 minutes of the surgery.... I am not going to finish this story, because you dont need to hear the details because of the situation you are in, but I will say her daughter passed away that evening. Make sure you spend EVERY second you can with her, take pictures non-stop... sit up in the NICU and hold her at every opportunity you have. That is not a gaurantee to ANYTHING, but it is dangerous and things can go wrong... dont have any regrets. I am praying for your baby girl! Good luck dear.
5. You poor dear. I don't know what the term is for what my cousin was born with but basically her valves were too small. She was about 2 months old when she had her first open heart surgery and she has had to have at least 3 more since then. She is now a healthy, beautiful 22 year old. Have faith hun, and turn to God. I will say a prayer for you and your family right now.