In the delivery room, both mother and father were anxious yet happy as they anticipated the birth of their first baby. The pregnancy had been uneventful. But when the baby was born, it was immediately apparent that there was a significant problem. The baby was anencephalic. This means that there is essentially no upper brain, and the dome of the calvarium, or skull, is also absent. These babies generally don’t survive the immediate newborn period, and often they have other significant abnormalities.
The obstetrician immediately handed the baby to the doctor. Even the father, beside himself in anticipation and excitement, could see that the baby was not normal. The mother had not been sedated and, of course, wanted to see her baby right away. The baby did not cry significantly, but it was not in any serious respiratory distress. It did maintain a deep bluish color, indicating the possibility of severe heart disease, which is common in these infants.
The almost instantaneous emotional sweep that takes place under these circumstances is impossible to describe. One moment everyone is joyous and laughing, joking and high with the expectation of a beautiful baby being born and all the possibilities that life holds. Then, in an instant, emotions sink to the abysmal depth of total disbelief, anger and despair.
The doctor put his arm around the father as they wheeled the baby over to the mother’s side. The doctor held her hand and explained the diagnosis. No one could listen carefully at that point. The doctor then wrapped the baby up and asked the father to carry the infant to the nursery. He told the mother that they needed to do some initial evaluations, but that they would be back to talk to her soon. As they walked to the nursery, the doctor asked the father, “What are you going to name the baby?” He did not respond but asked, “Will the baby live?” The doctor answered, “I need to evaluate him more closely.”
In the nursery, the baby began to breathe rapidly. The evaluation of the heart revealed a significant heart lesion. The chest X ray and ultrasound revealed cardiac defects that could not be successfully repaired. The baby had other problems as well, including abnormalities of the kidneys, leaving him without normal renal function. By this time, the nurses had wheeled the mother into the room where the doctor was examining the baby. After listening to the technical explanations about the multiple problems this baby had, she simply looked up at the doctor and said, “His name is John. It means the beloved one.”
Then she asked the doctor if they could hold their child. They went into a private room where the mother could be comfortable in a recliner and the father could sit close, and where they could both hold John and talk to him. The mother prayed for the baby aloud, then sang songs and lullabies to her son. She told him all about herself and her husband, their hopes and dreams. Over and over again she told him how much they loved him. The doctor sat spellbound as feelings of despair and hopelessness changed to ones of intense love and caring.
One of the most horrific experiences of life had been cast upon this couple, an experience that usually results in anger, hostility and self-pity, as hopes and dreams of watching your child grow up are shattered. But somehow within that terrible disappointment, this couple understood that what was most important was for them to give this baby a lifetime of love in the very short time they had with him. As they talked, sang, introduced themselves, and held him tight, they did not see the physical features that often have been described as grotesque. Instead, they saw and felt the soul of one small being who had only a few short hours to live.
And, indeed, John died a few minutes later. The value of a life is not dependent upon its length of time on this earth, but rather on the amount of love given and shared during the time that we have. This couple had given all their love to their son. He had truly been their beloved.