Subject:  Debating Very Bad prenatal DX |
Author:
Elizabeth
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Date Posted: 13:21:57 11/07/03 Fri
I got a very bad dx for my daughter almost a year ago when I was nearly 30 wks pregnant. Yes, she could possibly make it through birth. Yes, it was possible - not likely - but possible she could live several years with lots of medical intervention. But she wouldn't live to 10 and if she lived to 5, we could consider that a miracle. She would never talk, walk, use her hands. It was highly unlikely she would ever smile or hold her head up.
We were given termination information & heavy-duty neonatology & neonate subspecialty information.
So, end her life, or agressively prolong her life.
She was moving inside me. I needed DESPERATELY to hold this little girl in my arms. And I'm not sure that's possible after an abortion, but I knew that for me, it would not work to abort, and then hold her body in my arms. I HAD to have her in my arms, even if she was born still. And I had to see what her life was -- I wouldn't cause her pain without a very strong compelling reason, but I also had to watch her life unfold. To me, that's being a parent: witnessing the unfolding of the life you helped create.
She started breathing on her own after delivery, and lived over 5 months. When her body seemed strong enough to benefit from more treatments, we gave her more treatments. When her body seemed done, when she began to turn away in her own very subtle manner, we held her and loved her and kept her comfortable, so that she was held in love every single moment of her life. We found support in palliative care and then hospice care. ...Not always available for pediatric and perinatal cases -- REALLY necessary & something we're now supporting through a hospice endowment.
I guess my point is, we got a bad diagnosis. A really bad one. And we made sure it was a real diagnosis. And then we acknowledged reality. Because sometimes dr are wrong, but lots of times they are right. And babies do die.
But we found a way to acknowledge reality, and STILL hold an INCREDIBLY beautiful little girl, and take her on family vacations, and love her to pieces.
We're not saints, it isn't easy, and any remaining naivete about decorating a baby's room during the 20th week of pregnancy is gone. ;-)
But, faced with the same dx, I would make the same decision in a heartbeat. I can't even possibly explain the awe and joy that touched our lives and those of family & friends all around us just be sitting back and witnessing the completely unknown journey of this girl.
Maybe other expecting parents in a similar situation might see a third choice with my note. Witness your child's life unfold. See what it is.
You can hold your child, you can witness what unfolds, you will make it, and ultimately, you will be amazed. I don't know that the grief is more or less by not holding your child. I'm a mother, I already carried this child, I NEEDED the child in my arms. And ending her life unnaturally seemed to me as wrong a choice as forcing her body to live unnaturally long.
1 hour, 5 months, 45 years, 97 years...I'm just not qualified to choose the moment to end. But I am qualified to provide love and comfort and be a "mother bear" to require peace in every moment that is granted.
Blessings...
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