Choosing Naia: A Family's Journey by Mitchell Zuckoff.
In short, this book is about a couple who gets pregnant with their first child and find out at 20 weeks that the fetus has Downs Syndrome (DS). The first part of the book is about making the choice whether to keep the baby or abort (they had until 24 weeks to decide). The second part is Naia's birth and the medical complications. The last is kind of the after part - reflections.. and her first few years.
Just a few notes, this is a non fiction book written by a journalist who also included some history and statistics on the topic.
I have been shell shocked by some of what they say and amazed at others.. and then the ethical issues that I would struggle with as well.
Here are a few examples:
"As recently as 1968, the average life span for a person with DS (Down Syndrome) was just two years, mainly because of the large number of people with the disorder who died in infancy from the uncorrected heart defects, blocked digestive tracts, and other ailments. .... In 1997, the average life span had reached fifty years. "
My thoughts: interesting.. no one was to blame here, medical technology is amazing for the disabled and for the non disabled.
"One question the father asked an adoption specialist for children with DS: What if it's more than we can handle after the baby's born? Her answer: No problem, I have a long waiting list for these babies. You want to put the baby up for adoption, it's not a problem, not an issue. She explained that she had a hundred people waiting for babies with Down syndrome. ... people simply understood the value of these kids and knew how much they needed families." (pg.99)
My thoughts: wow! I never would have thought that people had such respect for life that they would be willing to adopt children with disabilities.. but it makes sense to me. I just never thought about it.
A baby was born in 1982 with some major health complications (.. some I don't really even understand). But the parents chose to not give the infant any treatment which in turn made the infant starve to death. Courts became involved but not in time as the infant died. This prompted action by the government and in 1984 Reagan signed what became know as the Baby Doe Amendment, which expanded the definition of child abuse to include the denial of care and treatment to newborns with disabilities. (pg. 129-130)
My thoughts: wow again! I guess I don't know where I'd draw the line of where to save a child and where to just say enough is enough. I just hope that I never have to make that decision.
topics like infanticide, eugenics, sterilization, this was written by someone in 1993 - "When the death of a disabled infant will lead to the birth of another infant with better prospect of a happy life, the total amount of happiness will be greater if the disabled infant is killed. The loss of happy life for the first infant is outweighed by the gain of a happier life for the second. Therefore, if killing the hemophiliac infant has no adverse effect on others, it would according to the total view, be right to kill him... It may still be objected that to replace either a fetus or a newborn infant is wrong because it suggest to disabled people living today that their lives are less worth living than the lives of people who are not disabled. Yet, it is surely flying in the face of reality to deny that, on average, this is so. (pg. 132)
My thoughts: who could say such a thing? I totally 100% disagree with this. I believe God has a plan, and it's better than mine.
In the 1940's a lady was misdiagnosed as severely mentally retarded when in fact she was severely hearing impaired. It was so much she couldn't understand people. She was institutionalized at age seven and and spent the next thirty-six years locked in a human warehouses. In 1986, it became clear that hearing was the significant part of her hearing and her sister removed her from that setting. A year later, she was creating such wonderful artwork that would later sell for thousands of dollars. (pg. 147)
My thoughts: what a sad story. I know there is really no one to blame but how many people out there are simply misunderstood?
Newsweek: 90% of women who find out they are carrying a fetus with DS choose abortion. (pg. 161)
My thoughts: WHAT?? This makes me angry. very angry... and very sad so much that I would like to get a second opinion on that stat.
Most kids with DS are in the mild to moderate range of mental retardation... meaning, most are NOT severely retarded. (pg. 278)
My thoughts: all the more reason to believe they are worthy of life... as sad as even that sounds.
Other thoughts:
As you can see, in this book, the couple chose to keep the baby. The girl was born early as with most infants with DS. She had a heart defect and was not able to get open heart surgery until she was 8lbs. She didn't not reach that until she was 4 months old.
In this book, and I'm sure would be with mine. One family member asked, " is it fair to keep the child?.... It's fine for people who don't have that decision. They have to have the baby, and they have to take state money. But is it fair for you to do it? ". pg. 71. That poses the question, how do I feel knowing my taxes go to help people like this? Do I feel like it's a burden? How would I deal with my own family who already make comments about "retarded people"? Also, can people with DS have a quality life?
I understand that some people have difficult decisions to make and it's scary not knowing what we as parents can handle. I guess that's where I thank God that I know he's there and will always help me along the way. It's a hard faith to have sometimes but man, what would I do if I didn't believe that? And I wonder what God thinks of all this? I'm sure he's a lot more saddened and frustrated than me... as he knows the truth, the value, and that what amazing things he could do in situations like this.
So, I'm not sure I'm open to discussion for anyone that strongly disagrees with my thoughts. But if you have an interest, this book is at Wloo Public Library. It's a tear jerker but has a happy ending.
** once again, sorry if there are typos, this is a very long post and I'm tired of proofreading
2 comments:
That is some heavy reading! Caring for a child with a disability would be so challenging but I agree with you in that we shouldn't abort a life simply because it isn't convenient for us. I hope and pray all of our children are healthy and we never have to face decisions like this. As good as this book sounds I don't know that I could handle reading it, at least not until we KNOW we are done have kids. Nonetheless, thank you for sharing.
Matt always says that to choose to abort a child with possible birth defects "negates the possibility of a miracle" meaning, God may heal and correct any defect before term. Give God a chance to act. It also deprives the parents a chance to witness a miracle in their own lives. Like becoming more compassionate, patient and tolerant of differences. It is so selfish to abort a baby that might be "different".
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