In a few weeks, we are supposed to sit in a genetic counseling class. The doctor is supposed to go over what genetic screening tests are going to be available to us and the pros and cons of them. Recently, Dutch, of a lovely blog
Sweet Juniper, wrote about his and his wife Wood's experience with a genetic screening for Down Syndrome during their second pregnancy. His poignant post touched a nerve with his fan base, and lengthy discussions ensued in the comment section. Wil and I have been discussing the very same topic even before we got pregnant. My college roommie Sofi and I always went back and forth on our views of abortion. Needless to say, I have thought long and hard about this. Would I ever abort an unwanted pregnancy? No. Would I judge others who choose a different path. No. I'm not in their shoes and I don't know their situation. And it's certainly not my job to judge anyone. Now, what will we do if the battery of tests we are about to face show that the baby will have some kind of birth defect? It depends. I have a cousin, who has a severe brain damage. He was born a healthy baby boy but got gravely ill and became permanently "damaged" while he was a small toddler. The details of what exactly happened were never really talked about, at least to us kids. I didn't see him a lot growing up because we lived far away from each other. But nothing, except for his appearance, ever changed over time. His grew into the body he was supposed to have, a handsome, broad fellow who was over 6' tall. But his brain was stuck in infancy. He had no control of his bodily function, his strength, or even his long limps. I witnessed him nearly chocking his own mother more than one time, because he was excited and wanted to give her a hug. Luckily, his family was well off and able to hire round the clock help. Putting him in some kind of special care home was not a practice in Thailand. What kind of life would they have if they couldn't afford the help? I would be deluded if I don't take into consideration that I am facing raising this child alone for many years while Wil remains in the service. We are so far away from our family support. Yes, we have good friends we can call on, but how many times can one beg for help from kind friends at 3 A.M. before she becomes a burden? Will I be able to deal with raising a child with special needs, however the degree of handicap, and giving him/her the quality of life he/she deserves? Will our marriage/sanity withstand the long hard times ahead of us? I sound selfish? Damn right I am and rightly so. There are so many questions to which we are still looking for answers. One thing is clear. If the tests reveal that the baby (or as Dr. House would say, "Call it a fetus. It keeps expectation low.") is with severe genetic defects that will undoubtedly cause it pain, suffering, and the inability to live outside of the womb, I will abort the pregnancy. I read about a woman who decided to keep the baby and deliver it knowing that it would shortly die after birth because of a genetic defect. I can't do that. To extend a life that is not destined to be by shoving feeding and breathing tubes down its fragile body just so the parents can have the opportunity to say goodbye is not MY idea of love. Wil knows exactly what to do if I am still technically "alive" only because there are machines that do the dirty work for me. To be able to let go and spare the suffering to this tiny life I already love so much is the ultimate gesture this mother can do. Everything else beyond this extreme scenario is still a little hazy in the decision department.
Hey guys! Just to let you know, I have a friend who had testing done and was told that her son would have down syndrome. When her son was born, there was nothing wrong with him. The tests are not always accurate. Just to keep that in mind. We love you both (or actually all 3 of you... wait, we love all 5 of you! We can't forget the puppies!) Uma, I'd love your email so I can lament over pregnancies pains with you!
ReplyDeleteI had those tests done too and they said that Christian had a good chance of having T18 (missing a chromosone so he would die minutes after birth). So basically I went through hell worrying for about 2 weeks until they did another ultrasound that showed no signs of T18. As you know, I have a healthy baby boy. Looking back, I would prefer to have never had those tests since it was a fear that never went away the rest of my pregnancy. Those are just my two cents!
ReplyDeletedeep topic.
ReplyDeleteT and I discussed this back when he was in school for cell molecular physiology at Chapel Hill. We both agreed it was fantastic that these tests were available. However, they screw the parents in the future if you have any sort of genetic predisposition, say like Parkinson's. Having your genetic history mapped out can make it to insurance companies (even thought they say it won't), and then you can be dropped b/c you have a 5% chance of developing something in the future. I hate when using better knowledge turns around and bites you in the butt.