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Parents Speak Out

Opinions From Those Who Have Been There
"I made my heartbreaking choice to terminate my pregnancy almost 5 months ago. Kimberly was to be our second child. Another little angel on earth with the one I already have. It was the worst decision I have ever made, but would I make it again? Yes I would. I couldn't bear to think of my child going through the pain and struggling of a handicapped child. If she made it at all, which chances were she wouldn't have. She was very much wanted, and we were devastated to lose her. To think of the people who would think this is wrong, just makes me cringe. Unless you have been put in this position, you don't know what it is like. You would give anything to hear the words there was a mistake, and everything is fine. It is an impossible situation, with only answers that can come from you and your heart. Do I think I made the right decision? Yes. Do I miss my baby? Yes. No one can tell you what is right or wrong, the grey area is large."

"Thank God for all of you who are speaking out. If it were not for you, I would go on believing that my husband and I were the only parents in the entire world who had to make such a heartbreaking decision. You have comforted us now in a way that confirms our feelings of "doing the right thing". I to have a pro-life attitude. However, anyone who criticizes any of us for the decisions that we have made simply have no idea. THEY HAVE NOT BEEN THERE! I would like to see what they would do if they were told by several medical professionals that the child that they were carrying had problems that were not compatible with life. Humane is the word. There really is a grey area. That is our area. We all will continue to connect in this grey area together for the rest of our lives."

"I remember feeling so offended after discussing inducement with our specialist and then being handed a form for abortion. I couldn't believe that my choice to end my babies agony was considered an abortion. Or should I say, "therapeutic abortion". Signing that form took everything from me. I had always claimed to be "pro-life" but now I don't know what that term means anymore. I couldn't believe that the government, the law or whoever had reared their ugly head into such a personal and private and horrible time of our lives. What if that choice had not been given? Who would have suffered the most? The law makers, the "pro-lifers" or my sweet baby?"

"My daughter was born on March 6th 1997 with a fatal genetic disorder so rare that it is not detected by standard prenatal testing. Though my daughter is the light of my life, her life is filled with intense physical pain. If she lives long enough, the disease will cause disfiguring scarring and a life of misery. I only wish we had had the chance to terminate the pregnancy rather than have our baby live this painful life. No one in their right mind could spend a day with my daughter and not realize terminating the pregnancy would have been the most humane thing to do. No matter how much I would have suffered her loss, it is nothing compared to the suffering she feels every day."

"I've found that I would go through weeks of feeling guilty. I felt ashamed that I would be willing to kill my own child because she would be a shame and an embarrassment to me. Of course we terminated for much more complicated reasons. But I was sure a pro at beating myself up."

"Years ago I volunteered for the Special Olympics and hold no fantasies or illusions about the blissful and happy state of people with mental disabilties. The book I was reading right before our horrible news claimed DS people were happier and easier in nature than a "normal" child. What a set up, for the parents and the handicapped child."

"Today I've found that I don't feel guilty anymore. We made the choice that was right for our child and for our family. I knew it was right when I did it, and although it is impossible to feel good about it, I don't feel bad either. It was horribly painful, but we saved her from a life of pain and confusion. I am not very religious, but I very much believe in the ways of nature. I believe it was better to release her energy and allow it to return in a healthier form. I don't think my sacrificing my life to a child with severe problems would've made me a better, stonger or wiser person."

"Our pain is so unique, and our actions cannot be explained to those who have not been there. Life is so very confusing, I am learning to see grey as a beautiful color."

"I refer to our procedure as "released" as that is what we did. We released our children from pain and suffering. We did not abort, terminate or interrupt anything. To anyone whose is wondering, I never hid what I did from anyone as I had no clue there was any debate on this issue. I learned real fast and hard how naive I was to think people were like me and that the majority of people whether pro-life or pro-choice all had ignorant comments, opinions, and/or judgments on my son dying. No one said, "Oh, I'm sorry", and left it at that. It is hard enough to go through what we're going through, but to be coupled with ignorance is enough."

"I look at it this way, if one needs to compare our situation, then compare it to health care proxy, DNR (do not resuscitate) . New York law states that if your baby is in a coma and is brain dead (or if he is in a coma and when he comes out he will be mentally retarded, etc,). then the parent has the right legally and ethically to "release" the child from his pain. No questions or comparisons. Brain dead means no function of the brain at all. The bioethics committee asks: What is brain life then? Brain life according to them, is when the umbilical cord is cut and the child takes his first breath all by himself. Therefore, if, when the life support system (umbilical cord) is shut off (cut) and the brain is dead or mentally retarded , the parents may DNR and this is ethical. Therefore , if technology can now tell us 100% that when life support is cut the child will be brain dead or mentally retarded, it should also be ethical to initiate a DNR order before brain life. This is exactly how I feel about the issue and this is where our situation should be addressed."

"So much controversy revolves around abortion these days, as always. It seems to me there should not be two sides of the issue, there should be three. Take for example: storytelling, there are usually three sides to every story.. yours, mine and the truth. I have respect for other people's opinions. I don't however, understand why so many pro-lifers miss the fact that the abortion issue is covered with a massive grey area. Maybe it is a grey area that to them is better left silenced to avoid drawing attention and sympathy to the other side of the issue?"

"We live in a modern world where women are having babies well into their 40's. The risks are lower now than they used to be, but the fact remains that some pregnancies never reach that happy ending we all are hoping and praying for. Sometimes there are problems in a pregnancy that cause people to have to make incredibly heartbreaking choices. This is an issue that needs to be looked at seriously."

If you would like to speak out, please submit your comments via e mail!

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