‘Your Child Is Mentally Retarded!’
“YOUR baby is mongoloid. She is mentally retarded and will never be normal. Think in terms of an institution for her.”
Those were the chilling words of the obstetrician who had delivered our baby just fifteen minutes earlier.
It was about midnight and my wife was under sedation. That was surely the longest and loneliest night of my life. Any hope that the doctor had made a mistake was shattered before daybreak when a pediatrician confirmed the diagnosis. My wife had to be told and a decision made.
By 9 a.m. I had broken the news to my wife. By 9:30 we had prayerfully decided that whatever the future might hold, the baby should enjoy the warm atmosphere of our home.
But less than an hour later the doctor rushed in to advise us that the baby was vomiting blood, and must be transferred immediately to the local children’s hospital. It was a wild ride through the city, and our arrival immediately led to a confrontation over our Bible-based refusal, as Jehovah’s witnesses, to allow blood transfusion.
By that evening I was told that the bleeding appeared to have subsided and might only have been blood swallowed during birth. However, the heart had begun to waver. Apparently the child had serious congenital heart defects, and I was informed that she could not possibly live through the night.
By the next morning, however, she had proved the doctors wrong, as she would many times in the future. The bleeding had stopped. Her weak little heart was still pumping away. For the next eight days we watched her through the glass walls of her incubator as she maintained her struggle to live. How marvelously the Creator has planted in all humans, even the very young and weak, an overwhelming tenacity to live! Although the medical staff expected her to live only a short time, they said we could now take her home.
As I sit here writing, a delightful, happy little blonde girl, now ten years old, plays on the floor beside me. She has just finished dialing the telephone for a long consultation with her grandmother about the health of her favorite doll. It is difficult to believe that she is the same child that we watched over, night after night, more than ten years ago, as her life hung in the balance.
The next crisis came only a few days after we brought her home from the hospital. She would eagerly take her bottle but could keep nothing down. The doctors thought she might have an intestinal obstruction. But she was so weak that it seemed impossible to contemplate surgery.
Returned to the Hospital
A few days later, however, she had to be returned to the hospital, since an intestinal obstruction was now definite. She would certainly die without surgery. The pediatrician in charge informed us that the surgeon would like to see us in his office.
My wife and I sat before his desk, bracing ourselves for another stand on blood transfusion. But we were wrong. His concern was not for permission to use blood. “Your child,” he said, “is mentally retarded. She will always be a burden to you and to the community. If she were my child she would not have surgery. Give me permission to pull out the intravenous tubes and she will be dead in just a few hours.”
Stunned, we drove home, promising that he would have an answer within an hour.
For a serious thirty minutes we prayerfully and Scripturally considered the doctor’s recommendations, but there was really only one decision to make. We both had respect for the sanctity of life. Apart from the religious and moral aspects of the matter, there was also the simple fact that we loved the baby. Retarded or normal, we wanted her to enjoy life. Who could really know the extent of her retardation? As promised, within the hour the doctor had his instructions, and within two hours she was on his operating table.
A fine surgeon, an excellent hospital and staff, no blood transfusion, and she lived! But the next crisis quickly followed. A frantic call from the surgeon. She was so dehydrated that the stitching would not hold. Everything had come apart. The surgery would have to be completely redone. This time there was little chance that she could survive. But what a reversal in the outlook of the doctor! Her power to live had sparked his admiration. “I take a medical swipe at her, and she just swings right back,” he confessed. Now he was so anxious to keep her alive, at all cost, that he spared no effort.
Again she lived. Eight weeks later—eight weeks of incubators, white gowns, masks and intensive care—and once again we took her home.
Joys Outweigh Problems
This was the dramatic beginning of a small life that has brought so much happiness to our family, and has resulted in many opportunities to witness to doctors, educators and others, and to honor the name of the Creator.
For the first few years of her life, we wondered if she would ever learn to talk. Our reflections on those times now produce smiles, as occasionally we wonder how to get her to stop talking. For several years it seemed that she would not walk, and it was a delightful day indeed when we entered the playroom to find her standing—wobbly and shaky on her feet—but standing. So much that is commonplace in normal children is a pinnacle of joy when dealing with the mentally retarded.
It was just a few days ago that, hand in hand, she and her mother worked together in distribution of Bible tracts from house to house. Only today she skipped up the driveway from her school bus, laughing and anxious to show me her latest accomplishments in schoolwork. Many times callers have complimented us on the good manners and clear articulation of the little girl that answered the telephone, and we no longer need to explain that she is mentally retarded.
Mongoloid children have few antibodies in their system, and even a common cold is a serious matter. For most mongoloids, each winter is a series of chest infections, bronchitis and, in her case, even pneumonia. We have been so grateful for doctors who take a special interest in children of this kind, and there are many. At four years of age, she made several trips to Dr. Denton Cooley at the Texas Medical Center for surgical repairs to her fragile heart. She still lives with a limited life expectancy due to heart defects that are beyond repair. For the past several years, she has made regular trips to Dr. Henry Turkell, a Detroit physician who has concentrated on treatment of mongoloid children, both in America and Europe.
As I write, I am reminded also of the terrible night when, she having lost half her blood, a courageous Florida pilot risked the dangers of an Atlantic fog to race her by air ambulance to cooperative medical help after a local doctor and hospital refused even to look at her unless we first gave permission to transfuse blood into her system.
What If Your Child Is Retarded?
We are, of course, not alone. Every year hundreds of thousands of children are born mentally defective. Mongolism is just one of the many types of retardation. All parents involved face the same basic problems.
“Why has this happened to us? What do we do now? Should we keep the child or look for an institution? What effect will this have on the rest of the family? What will friends and neighbors think? What did we do wrong? Should we have more children? How do we cope with the situation?” These are just a few of the questions parents facing this problem have to answer.
To all of these we would offer a simple word of advice: Relax. Take the child home and let time work things out. My wife and I, our other child and a perky little girl with long blonde hair are all here to support that advice.
We have reflected often about the doctor who wanted permission to let her die. Unwittingly, he made us decide if we wanted her or not, whether normal or retarded. From that moment, we have never looked back with regrets, and what a blessing she has been to us!
For parents of the mentally retarded there are so many rewards. The retarded ones feel love and they express it with total lack of inhibition. The benefit of this influence for good in any household is impossible to measure. For instance, if displeasure shows on my face, how long can I remain annoyed when little footsteps doggedly pursue me through the house and a small voice demands to know why I do not smile? How trivial become problems, disagreements or even economic difficulties when one experiences the warmth and the affection expressed by a retarded child!
For most parents, their introduction to the subject of retardation is sudden, and most are badly informed. It is obviously an experience that nobody plans to have. Here are some very simple early steps you can take.
First, inquire what facilities are available in your community—nursery schools, home nursing care, specially trained doctors, and so forth. There are usually dentists, opticians and others who have specially prepared themselves to help the retarded. And many services are available without charge.
Later on, check to see what schools are available. Most communities have educational facilities, and children are usually transported by bus.
Do not underestimate the ability of your child to learn. Our youngster wanted to learn to tie her shoes. Frankly, I did not think she was able to learn, and I failed to take the time to teach her. She kept watching. One day she proudly pushed me into a chair, and I watched while she tied both of her shoelaces in neat bows. She simply became tired of waiting for help and mastered it all by herself.
It was just last week that we were thrilled to watch her bounce happily to the end of the diving board, plunge headfirst into deep water, bob up and stroke strongly to the side of the pool to claim first prize in a diving competition sponsored for retarded children.
She rides her own two-wheeled bike, dials the telephone, regularly writes a Bible text for the day on the kitchen blackboard, and demands to know about every caller at the house, whether or not he or she is “in the truth,” that is, one of Jehovah’s witnesses, walking in accord with Bible truth.
Most Important of All—Love!
If I were to emphasize any one particular point in the treatment and help for retarded children, I would concentrate on the simplest, most important thing of all—love the child. Love will do more than all the special training, schools, doctors, psychologists, social workers or institutions can do. If you love the child, the child will love you; not just with the normal affection that exists between parents and children, but with a love so intense and overwhelming that it simply defies one’s ability to produce superlative adjectives. While limited in so many ways, the retarded child seems endowed with a superabundance of love.
One of the greatest rewards with our own little girl occurred recently while spending several days at a resort hotel. Toward the end of our stay a physician, who had watched our two children playing each day at the pool, requested permission to ask me a personal question. Can you imagine my surprise when he asked: “Is your little girl retarded?” Even with his medical training and several days of observation, he just was not quite sure.
Regrettably, perhaps the greatest problem faced by parents of retarded children is the lack of understanding on the part of uninformed persons, both adults and children. How we wish that more persons, even those in our own circle of association, would inform themselves and their children about giving consideration to those of limited ability. When parents do not bother to explain the problems of the retarded to their own children, difficulties often result. Like the time that another child hootingly accused our little blonde: “You’re retarded!” There is just no answer when a mentally retarded child climbs on your knee and wants to know “What does it mean to be ‘retarded?’”
If all your children are normal, be grateful. But if someday you hear the words, “Your child is retarded,” there is still so much for which to be happy. Invest a lot of love and the returns will be more than you and your family can absorb.—Contributed.