Commentary : A Child With Special Attributes

It seems like a typical child’s game. I hold out a red ball and little David hurls it into a bucket with glee. I laugh and clap. David echoes my laugh and clap. David giggles with such enthusiasm that other family members nearby begin to chuckle, too. He claps with such fervor that he momentarily loses his balance and falls backwards. Like all children, he goes through many trials and errors in mastering the sitting game. Within seconds, this happy little boy regains his upright position and the game is on again. His face nearly disappears behind his gleeful, toothless grin. What a carefree, happy life.

Or is it?

Not according to the recent lawsuit filed by Mark and Susan Robinson of Huntington Beach. The Robinsons and their lawyer, Daniel J. Ford Jr., are convinced that the Robinsons’ 10-month-old son, Brent, will require financial support on a lifelong basis and that his very existence has taken an extensive emotional toll on the parents and will continue to do so. You see, Brent Robinson has much in common with my nephew, David Chapman. They both have Down’s syndrome.

Mark and Susan Robinson filed a “wrongful life” lawsuit against Dr. Burr J. Dalton, claiming that he failed to perform the amniocentesis test for Down’s syndrome that they asked him to do. The couple said that they would have opted for an abortion if they had known that their baby had Down’s syndrome.

Certainly the Robinsons have the right to sue. But they do not have the right to publicize so many false statements about Down’s syndrome.

Down’s syndrome, the genetic imbalance that once carried the unfortunate label “mongoloid,” is a more common birth defect than many people realize. Twenty years ago it was generally accepted that these children would never be able to learn anything and that the best thing for their families to do was to institutionalize them and get on with their own lives. This kind of thinking is not only archaic, it is false. But it is exactly this kind of misleading information that was in The Times’ story last month about the Robinsons’ lawsuit.

The Robinsons’ lawyer made it sound as though all children with Down’s syndrome are very sick. Years ago, such children did not live long because of the many physical problems--which vary greatly--that accompany the defect. The most serious is the alteration in development of the brain that occurs in every child with Down’s syndrome. In less than half of the children, there is also a serious defect in the heart, which can now be corrected through surgery.

Clearly, having a child with Down’s syndrome is a devastating heartbreak. Fortunately, my sister was contacted by members of the many excellent support groups that immediately visit parents of children born with Down’s syndrome, offering the emotional support they so desperately need. Now, sixteen months later, my sister adores David, and he is a loved and accepted member of the family.

Parents exposed to false information about Down’s syndrome could be tragically misled. Some of them simply do not feel equipped to raise such a child. But they don’t have to. Few people are aware that there are adoption agencies specifically for adopting children with special needs, and there is a waiting list of parents who want only to adopt children with Down’s syndrome. Obviously, these groups know something about these children which many people don’t.

I wonder if the Robinsons know that an amniocentesis test can sometimes register a false positive indicating that a normal child has Down’s syndrome. That can lead to disastrous results.

The Robinsons seem to be unaware of the great potential of children who are born with Down’s syndrome. Their arguments in the suit portray a child with Down’s syndrome as hopeless and helpless. This is simply not true. A child with Down’s syndrome is more like normal children than he is different. His development is delayed, but he does most of the same things that normal children do.

Misleading publicity can sway public opinion when it is time to vote for special education funding, and groups will lose the ground they have worked so hard to gain over the years. It is poor attitudes that will continue to segregate these children and limit the opportunities they could have. Because there are so many misconceptions about Down’s syndrome, it almost seems to be more of a challenge to educate the public about the condition than it does to educate the children themselves.

To say that there’s nothing that can be done with a child with Down’s syndrome is not fair. Different children will reach different levels that can be strongly affected by what his family believes and expects from him. Everybody’s life has challenges. Parenthood is one of them. A child with Down’s syndrome may be below average in physical and mental development, but that doesn’t mean he or she won’t have a quality life.

Many of these children grow up to have jobs, live independently and even marry. Many people think the condition should be called ‘Up” syndrome because the children are usually so happy and bring a special joy to their household. Words like “sweet,” “loving,” “innocent” and “caring” are often used by parents describing their children with Down’s syndrome. This is a far cry from the bleak outlook painted by the Robinsons and their attorney. The public needs to learn the truth about having a child with Down’s syndrome. Is it a severe blow? Yes. But a wrongful life? No.