August 2003 Newsletter The road is long with many a winding turn that leads us to who knows where, who knows when But I'm strong, strong enough to carry him. He ain't heavy, he's my brother. So on we go, his welfare is of my concern. No burden is he to bear, we'll get there. For I know he would not encumber me. He ain't heavy, he's my brother. If I'm laden at all, I'm laden with sadness That everyone's heart isn't filled with the gladness of love for one another. It's a long, long road from which there is no return, while we're on the way to there why not share? And the load doesn't weigh me down at all He ain't heavy, he's my brother... -Written by B. Scott and B. Russell, sung by The Hollies Eight-year-old Jade Fields has just come home from a school for disabled children. Her parents, Willy and Cynthia, are there to meet her. Jade is severely retarded, can't walk, and can only say a few words. She’s also legally blind, fed through a tube in her stomach and often has to be hospitalized. The Fields take care of her with help from Sharday, their 17-year-old son. Willy Fields, a sanitation worker, rushes home to spend time with Jade every day after work. “I can't wait to get home to see her, to see her smiling and I know she's not the healthiest girl in the world, but, you know, what she feels I feel, 'cause she's my heart,” says Willy. “That's all I can say; she's my heart.” But in 1999, the Fields filed a "wrongful birth" lawsuit against their obstetrician, claiming he should have detected Jade's condition and told them about it. 60 Minutes on CBS aired a disturbing issue: “wrongful-birth” lawsuits. “Jade is the best thing that could have ever happened to us, I mean she's our foundation, she's our rock. But if we had known, I didn't have an option,” says Cynthia, who would have had an abortion if she knew about Jade’s condition. One of the most disturbing things about that statement is that the family says their child is the best thing that could have happened to them, YET if they had known she was going to be disabled they would have aborted her?? What a contradiction. How sad. The family’s malpractice lawyer, Rachelle Harz argued, “The doctor didn't cause the child's retardation, what he caused was not giving the proper information to the parents to allow them the choice to abort the child. He caused the birth of this very, very neurologically impaired child.” In 1973 the Supreme Court upheld a woman's legal right to an abortion, and that opened the door to the first successful wrongful birth lawsuit a few years later. But wrongful birth suits are not accepted everywhere. Right now, only 28 states recognize them, and nine states prohibit them outright. And most of these cases are settled out of court. Also, sonograms don't always make the most convincing evidence at trial. Even the best obstetricians can have a difficult time reading them. Dr. Jim Shwayder, Director of Ultrasound Medicine at the Denver Health Medical Center, has testified as an expert witness in many wrongful birth cases for both doctors and patients, so 60 Minutes asked him to examine the evidence in the Jade Fields case. “One of the things that's discussed here for instance is a slightly thickened neck fold. That's become a marker for Downs Syndrome,” says Dr. Shwayder. “But we also know that only represents about 45 percent sensitivity in detecting a Downs Syndrome baby. That means that over half those babies that have a thickened neck fold do not have Downs Syndrome.” It's estimated that thousands of wrongful birth lawsuits have been filed since 1973, and there are no restrictions on the birth defect for which parents can sue. “Should someone come up with a criteria as to what injuries are okay and what injuries aren't okay to be determined prenatally for abortion?” asks Harz. “Who are we to make these judgments?" Another story profiled on 60 Minutes was about 9-year-old Ryan Powers, who is also one of Harz's clients. Ryan was born with spina bifida, and is paralyzed from the waist down. But mentally, he's normal. He’s mainstreamed in a Catholic school, and on his last report card, his mother Karen said he got straight A's. She didn't want to talk on camera about the wrongful birth lawsuit she brought against her doctor, saying she wanted "to put all that behind us." “It seems as though we're questioning not only the value of life, but the value of people who are not perfect,” says Anita Allen-Castellito, a law professor at the University of Pennsylvania and a bio-ethicist. Castellito worries that Ryan will be damaged emotionally if he learns that his mother testified that she would have had an abortion if she had known about his condition. “Realistically how many children are going to hear that complicated story as opposed to the simpler message that ‘I didn't want you, you're disabled, I didn't want a disabled child,’” says Castellito. “I know that it's not true that spina bifida causes people to have miserable lives,” says Marsha Saxton, who was born with spina bifida and now works with disabled children as a researcher at the World Institute on Disability. “Wrongful birth suits give children and adults with disabilities the message that our very existence was a tragic mistake,” says Saxton at a disability conference. “The message is that these children’s lives are so miserable and such a burden to the family that the only compensation would be millions of dollars. And this is such a distortion, of what these children’s lives are like.” In fact, Saxton says that children with spina bifida, or with Downs Syndrome, two of the more common causes of wrongful birth suits, can and do live perfectly happy lives.
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A Gift from God
All children are a gift from God. We are all made in the image and likeness of God. “Whatsoever you do to the least of My brothers, that you do unto Me.” What a joy it should be to have the privilege to love and care for someone who has special needs. Instead of considering it a burden, we should consider it a blessing. And what a blessing they are in our lives. Our son Luke has autism. He has not only taught us what is important in life, but has taught us the value of every human life. He has brought us closer to God.  Background provided by Jonathan's World |