Tuesday, December 27, 2011

They are happy!


Down syndrome, also known as trisomy 21, is very close to my heart now that I've had Ella. I read this article when Ella was in the hospital and it really touched my heart. I am so glad I found it again so I can share it with all of you. They say people who have down syndrome are happy, and the same is said about all people who have "trisomy" title. Even though Ella was only with us for 23 days, I can not express to you how happy she was!! Her peace was contagious, it really was. She was the most perfect baby, and she made it really easy for us to take in life day by day and spit out the bones. While we were in Crouse we were pressured, many times, to sign DNR papers- do not resuscitate. They came to us with that option at the same exact time they came to us with Ella's diagnosis, day three of her life. One thing about Trisomy 18 is that the brain is sometimes not fully developed, and many are born without a brain! However many times the brain gets lazy and stops signalling to the rest of the body to breath, so stimulation is needed sometimes, by an outside party, to get the brain to "wake up" and do its job. With Ella, this happened a couple of times in the hospital, but it took us picking her up and rubbing her to get her to take a breath. Once Ella had her diagnosis and the Dr's were happy, they were done with her. Literally. She was labelled terminal and their mission was to get her out of the hospital and free up her bed. For the first few weeks I could not even think about the horrible things that were said to us. They told us on Friday what her "diagnosis" was and the only regret they had was that it wasn't done sooner so Ella could be "terminated." They were frustrated we were not on board for the DNR papers, and continued to try to talk us into it day after day. Every day we were told was going to be her last so we should just stop trying to stimulate her, and her "quality of life wasn't going to be very good anyway." I have a friend who had a family member who went through a very similar situation at Crouse, only her daughter was there for three months and had Down Syndrome, and fought the same battle with the Drs that we did. It's heartbreaking to think that maybe the statistics are so low for the life expectancy of these children because someone was told by an "expert in the field" that this was the right thing to do, to just sit there and let your baby fight for its life while the nurses standing around turned their backs!! Are you kidding me??!!?? I read similar stories over and over again on the support groups. How does anyone really know someones quality of life? I would say based on how happy they were. If they were TRULY happy, not just a superficial happiness. So maybe if 99% of these people are truly happy, then whats the big deal? Seems pretty cut and dry to me. Nowhere else in the world has anyone ever done a study and found 99% of the subjects to be happy, (I found that statistic somewhere, I'll have to do some more searching to find that one again. ) So maybe these people know something we don't know, maybe we can learn something from them. Maybe we should think twice before we kill them. Maybe our definition for "quality of life" needs to be reevaluated. Maybe its the people who have never known a person with a chromosomal disorder who are calling all of the shots, and maybe they are wrong! Discrimination is illegal, but Ella was very discriminated against! I am proud to call Ella my own, and I am glad she had a spokesperson like us to be able to call the shots. It was very hard for us to leave her in the hospital in the care of people who didn't think her life was worth living. But by the Grace of God she was able to come home, to our home, where we could love her on our own terms and she only heard words of love and compassion from those who surrounded her. "every tongue that rise against thee in judgement thou shalt condemn...and their righteousness is of me, saith the Lord" Isaiah 54:17

1 comment:

  1. It is so sad that people think that way. No one has the right to decide when someone dies.