As I was passing the newborn intensive care unit, I saw him through the window. He and two other doctors were standing over a crib in a heated discussion. My heart began to pound. I wanted to burst into the room, but I forced myself to wait. When Dr. Watson looked up and saw me, he said something to the others. They all turned to look at me. I was finding it hard to breathe. Dr. Watson came out into the corridor.
“What’s happening?” I asked. “What’s—what’s wrong?” I could hardly speak.
“I’m afraid I have bad news for you, Mr. Sheldon.”
“The baby is dead!”
“No. But—” He was finding it difficult to go on. “Your baby was born with spina bifida.”
I wanted to shake him. “What does that—? Tell me in plain English.”
“Spina bifida is a birth defect. During the first months of pregnancy, the spine doesn’t close properly. When the baby is born, it has only a thin layer of skin over its spine. The spinal cord is really protruding through the back. It’s one of the most—”
“Well, for God’s sake, fix it!” I was screaming.
“It’s not that simple. It takes an expert—”
“Then get some experts here. Do you hear me? Now! I want them now!” I was crying, totally out of control.
He looked at me a moment, nodded, and hurried away.
I had to break the news to Jorja. It was probably the most difficult moment of my life.
When I walked into the room, she looked at my face and said, “What’s wrong?”
“Everything is going to be all right,” I assured her. “Alexandra was born with a—a—problem, but some medical experts are on their way here to take care of it. Everything will be fine.”
At four o’clock in the morning, two doctors arrived and Dr. Watson took them into the newborn intensive care unit. I stood outside for a few moments, watching their faces, willing them to nod, to smile reassuringly. Finally, I could stand it no longer. I returned to Jorja. I stayed with her and we sat there, silently, waiting.
Half an hour later, Dr. Watson came in. He looked at Jorja and me a moment and said quietly, “Two of the top experts who deal with spina bifida have examined your baby. They agree that there is very little chance that she can survive. If she should survive, she will probably have hydrocephalus, an accumulation of fluid in the brain.” Every word was a hammer. “She will also have bowel and bladder complications. Spina bifida is a permanently disabling birth defect.”
I said, “But it’s possible that she can live?”
“Yes, but—”
“Then we’ll take her home. We’ll have twenty-four-hour nurses for her and all the equipment—”
“Mr. Sheldon, no. She needs to be placed in a care center where they’re used to dealing with this problem. There’s a home we recommend near Pomona, where they can handle this.”
Jorja and I looked at each other. Jorja said, “Then we can visit her.”
“It would be better if you didn’t.”
It took a moment for it to sink in. “You mean—”
“She’s going to die. I’m sorry. All you can do is pray for her.”
How do you pray for your baby to die?
I read everything I could find about spina bifida in medical journals. The prognosis was not good. When Mary asked where Alexandra was, we told her that the baby was sick and would not be coming home for a while.
I had trouble sleeping. I had visions of Alexandra lying in a crib, in pain, in a strange place with no one to hold her, no one to love her. Several times I awakened in the middle of the night and found Jorja in the deserted nursery, crying. But there was hope. The records showed that some children with spina bifida lived into their adulthood. Alexandra would need special care, but we could give it to her. We would stop at nothing. Dr. Watson was wrong. Medical miracles happened every day.
When I came across an article about some new life-saving drug, I would show it to Jorja. “Look. This wasn’t even on the market yesterday. Now it’s going to save thousands of lives.”
And Jorja would look for articles about medical breakthroughs. “It says here that new scientific discoveries are about to change the face of medicine. There’s no reason they can’t find something that will save our baby.”
“You bet there isn’t. She has our genes in her. She’s a survivor. All she has to do is hang in there for a while.” I hesitated, then added, “I think we should bring her home.”
Jorja’s eyes were brimming with tears. “So do I.”
“I’ll call Dr. Watson in the morning.”
I reached him at his office. “Dr. Watson, I want to talk to you about Alexandra. Jorja and I think she—”
“I was about to call you, Mr. Sheldon. Alexandra passed away in the middle of the night.”
If there is a hell on earth, it exists for parents who have lost a child. There is an unspeakable grief that never entirely goes away. We could not stop thinking about Alexandra and Mary growing up together, having a wonderful, happy life, sheltered by our love.
But Alexandra would never watch a sunset or walk through a beautiful garden. She would never see a flight of birds or feel a warm summer breeze. She would never taste an ice cream cone or enjoy a movie or a play. She would never wear pretty dresses or ride in a car. She would never know the joy of falling in love, and having a family. Never, never, never.
There is a belief that as time goes on, the pain diminishes. Our pain grew stronger. Our lives had come to a standstill. The only comfort we had was Mary, and Jorja and I found ourselves becoming ridiculously overprotective.