The waiting is miserable...its long and I'm sorry. — The Bump
Special Needs

The waiting is miserable...its long and I'm sorry.

I'm usually a lurker, but have reached a point at which I have to get it out, even if only for myself.  We had a fetal echo yesterday morning to confirm a CHD that is going to require open heart surgery with-in days of our sons birth, so that was hugely depressing, but we could get through it.  Whats killing me is waiting for the results from an amnio last Friday.  Apparently this CHD is associated with Downs and DiGeorge syndromes.  It could be an isolated defect, but I'm scared to death to find out its not.  We've been married forever but the pregnancy was a huge (wonderful) surprise and now something is threatening to change everything.  DH and I have talked it to death and we still don't know what to think.  Our families are so excited that we are finally starting a family, but we're not sure we're strong enough to handle everything if the news is bad.  I want to believe that we are not selfish and would do anything for our son to have life, but at this point we are both second guessing.  I haven't been able to get anything done for the last few days, today is the day we should get our FISH results, and the waiting is only making it worse.

So sorry for the long vent, but just can't stand talking about it to family and friends right now.

JMA 2/26/09-9/28/09 MMA 11/22/10

Re: The waiting is miserable...its long and I'm sorry.

  • I'll keep you in my prayers!  Waiting for test results is sooooo hard!  We underwent a massive amount of tests after our baby was born - I can imagine its even more stressful when you are pregnant!!! 
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  • I could've written this post a year ago when we were waiting on DD's amnio results. At the time I felt suspended in shock. I was going through the movements of living but felt submerged in my own personal hell.

    I am so sorry you are going through this. It's just awful.

    Our amnio came back normal but DD was born with a rare genetic syndrome that could not be picked up by amnio (she has a mutated gene). Doctors through out the option of termination which I'm not opposed to but they could never definitively tell us that anything was really wrong with DD. I just couldn't do it in good conscience.?Unfortunately, we didn't know the extent of her birth defects until she was born.

    I do wonder what our life would be like if we terminated. Would my life be happier, easier? Would I feel like I made a mistake? I'll never know. Sometimes I wish I had but I love DD dearly thought I hate our?situation.

    There is no right or wrong thing to do. I will tell you that a normal amnio will not mean that everything will be okay. Your DS still could be born with a syndrome. But if the CHD is the only red flag and is fixable I think you could be optimistic.

    No one is prepared to have a special needs child and there is nothing easy about it. But being a mother is a wonderful thing and I hope that if you decide that the time is not right that you will have the opportunity one day.?

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  • Your situation is actually exactly where we are at right now. We had an echo cardiogram last week and we found out our baby boy has Tetraology of Fallot, which is fixable sometime after birth with open heart surgery.  But, we just had an amniocentisis today to make sure that there are no genetic defects coupled with the heart abnormality.

    Our perinatalogist doesn't think that there are other genetic components based on the ultrasound and everything else looking and measuring normal, but there is always that chance. I agree, the waiting is the hardest part!

    We should keep in touch...it is nice to talk to someone else who is going through almost the exact same thing. It is getting to be too much to continue explaining everything to family and friends as we go through this long and seemingly neverending process.

     Good luck to you and I hope you get good results!

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  • I just wanted to say that I am sorry.... I've been in your shoes.  I have 2 children with congenital heart defects.... one with just Long QT Syndrome and another with Long QT, congenital heart block, plus some structural issues that required several heart surgeries in his first 2 months after he was born.

    It's so scary.... but know that children are so much more reslient than you think... even as newborns...

    I will be thinking of you and your baby - best of luck to you.

    Hannah

  • Waiting is so hard.? I'll be thinking of your family.??
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  • The waiting is the worst part.  We also waited for the results from a DS test and I have to say that it was the longest week of our lives.  So many things and scenarios run through your mind.  I am keeping you in my thoughts and I wish you the best.

  • Yes, waiting is hard, and I hope you got the news you wanted.  Hang in there.
  • We should keep up.  This board has been one of the only things that makes me remeber that I need to keep looking forward, it would be sooooo nice to talk to someone else who's in the same place I am right now.  Feel free to email me, [email protected]  I'm in Houston.
    JMA 2/26/09-9/28/09 MMA 11/22/10
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