“Abby Ruth,” Ensign, Aug. 1986, 57
“We have bad news about your baby,” the doctor said gravely. As I looked from him to my husband, Randy, I realized that the condition of our unborn child must be very serious.
Hydrocephalus was the term the doctor used—water on the brain. The extent of brain damage would be determined by how long the condition had existed. He assured us that it probably had not existed very long, since he had not detected the enlarged head in any of my checkups. But the only course of action was an emergency cesarean section.
The doctor continued in his low monotone. He kept calling me a “high-risk” cesarean. He said that in cases like mine it is sometimes necessary to destroy the baby in order to save the mother.
Randy gave me and our unborn child a blessing. He had become an elder only a little over a month before (we had been sealed in the temple just two weeks earlier), and this was his first opportunity to exercise his priesthood. I received that blessing with renewed gratitude for him and his efforts to become worthy. Soon afterward, a calm feeling came over me and I knew that both the baby and I would live.
I vaguely remember being wheeled into the operating room, and then—an empty void. The next sound I heard was a baby’s cry in the distance. A nurse said, “It’s a girl. Do you want to see her?”
“No!” I squeezed my eyes shut. Suddenly I was too terrified to look at her, panicking because I was so unprepared for this turn of events. When they quietly took her away, I was relieved, but at the same time I felt terribly guilty.
At 1:30 A.M., I woke with a start. The hospital room was dark except for the diffused light of the full moon coming through the window. I buzzed the nurse and asked for something for the searing pain. Then I asked for my baby. When she brought her, my first thought was “Angela!” The baby looked incredibly like our oldest daughter. Her head was enlarged, but to me she was beautiful.
I lay awake for a long time after the nurse took her away. So many thoughts raced through my dull, aching mind. “Please, Father,” I pleaded, “help my baby!”
I cried long into that sleepless night, until I saw the darkness slowly begin to fade into morning through the window.
All that day Randy and I waited for the neurosurgeon to arrive with word about our baby’s test results. When he finally came at 10:30 P.M., he spoke in a cold, deliberate voice:
“I’m not going to beat around the bush,” he said. “Your daughter has no chance for a normal life. She has no brain.”
Mere words can’t describe how we felt. I was stunned by his callousness as he continued, seemingly oblivious of the torture Randy and I were suffering.
“She’s not really what we call hydrocephalic, with ‘water on the brain.’ The term that would probably best describe her is anencephalic; her brain simply never formed. All she has is the brain stem, which is the bare minimum necessary to keep her alive. It controls all the involuntary functions—the heart, respiration, digestive system, and reflexes. She will never roll over or crawl or walk. She will not advance in any way. She’s blind and deaf. She will never respond to you in any way, and she will have to be fed through a tube.” He volunteered this information very precisely, almost mechanically.
Then he explained our options: we could take her home or put her in a rest home for babies of this nature. He said he wouldn’t recommend taking her home because it would be too hard on us emotionally to care for her and grow to love her, never having her love us in return. She wouldn’t appreciate anything we did for her. Others could give her the care she needed, he said; why should we put ourselves through such an ordeal when we didn’t have to? He guessed that she would live about six months at the most.
When he walked out of that hospital room, all our hopes for our baby girl left with him. Randy and I threw our arms around each other and struggled to pull our shattered emotions back together. We had tried to prepare ourselves for the news that she might be retarded, but we had never dreamed it would be this. It felt like the entire weight of the world had crashed down on top of us.
You truly find out who your friends are at a time like that. Randy and I were overwhelmed with the love and concern from both of our families, as well as all our wonderful neighbors and friends. They’ll never know how their love strengthened us and gave us the courage to go on. If it hadn’t been for them and our own faith in Heavenly Father, I would never have been able to endure that traumatic period.
We named our daughter Abby Ruth. The decision to take her home was not an easy one for me. Randy had no doubts, but I was plagued with them. The neurosurgeon’s cold attitude toward her had temporarily blinded me to the truth. I felt a mother’s natural need to love and protect my baby, but I couldn’t bring myself to get attached to her because it hurt so badly. Every time I looked at her it felt as though my heart was being ripped out of me.
When Abby was three days old I had held her only a few times, and that all-important bonding hadn’t taken place. Late that night, feeling forced into making a decision that I didn’t want to make, I walked down to the intensive care nursery to see her. I stood next to her bassinet and watched her stare blankly into space. One of the nurses came to stand next to me, and I shook my head sadly.
“The poor little thing doesn’t have any idea of what’s going on, does she?” I asked quietly.
The nurse turned to me and spoke with conviction. “Maybe her mind doesn’t know, but her spirit does.”
That simple statement hit me with a tremendous impact. Why hadn’t I thought of that before?
Later that night I dreamed that a beautiful young woman with long, waving blonde hair and dressed in a flowing white robe came walking toward me through a mist, with arms outstretched to greet me. I knew then that when my time comes and I leave this world, Abby will be there waiting for me in all her perfection. Knowing that, how could I turn away from her in her hour of need?
Once home, we found that Abby seemed to respond more than the neurosurgeon had predicted. However, it wasn’t long before her head began to enlarge rapidly, and the neurosurgeon had to install a shunt to drain excess fluid. He felt it was unnecessary surgery, but for us to stand by and do nothing would have meant watching her suffer a slow, agonizing death. We couldn’t have borne that. She had a heart murmur, and we despaired that she might not make it through the surgery, but we felt we had no alternative.
Abby withstood the operation valiantly, and we marveled. What kept her alive? Eventually her appetite improved and she began to gain weight.
I noticed almost immediately when she came home again that she could hear, and we were very encouraged. But it soon proved more of a problem than a blessing. She reacted violently to the slightest sound. More than once I walked into her room and spoke softly to her, only to have her turn purple and start screaming. She had no way of relating to the different noises around her, and they terrified her.
That was the beginning of the hardest summer of our lives. Abby Ruth was up all night long, night after night, crying until Randy and I thought we would lose our minds. Nothing we did seemed to help, and I got so used to her constant crying that even when she wasn’t, my mind played tricks on me. Countless times I had just begun to doze off when I thought I heard her crying. I dragged out of bed, only to find her sound asleep. The human body can only go so long without sleep, and I was not only an emotional but also a physical wreck.
Many times she screamed all night until 5:00 or 6:00 A.M., then finally went to sleep. By 10:30 or 11:00 A.M., when she still hadn’t stirred, I had to force myself to go check her. What if she was dead? What would I do? I knew that how I reacted to such a situation would deeply affect my other two daughters, and the pressure became more than I could handle.
A desperate trip to our pediatrician proved a waste of time. He gave us a prescription to calm her down, with no guarantee that it would work. It didn’t.
Finally, I had reached the point where a complete breakdown for me was not far off. Near the end of September we made an appointment with the chief of staff at the state training school, hoping to get some kind of help.
The staff at the state school were very receptive. At last we found people who really understood what we had been going through. They offered to take her, to give us one week’s respite.
At the end of that week, the same pattern began again. She cried constantly, day and night, and many were the times that we stood next to her crib or held her and cried right along with her. I felt so helpless, and I could see no end in sight. “What kind of life is this?” I asked myself. My two older children were beginning to suffer from neglect, and so was my marriage.
Another major decision had to be made, and Randy and I were at odds. He felt that placing Abby at the school would be the same as deserting her. I looked on it as our only chance to return to a normal life and continue with our family; it would be impossible for me to go on giving her the twenty-four-hour care that she needed.
I couldn’t help but feel that I had failed her, though, and in my grief I turned to Heavenly Father. He knew the whole story, but I repeated it all to him on my knees late one night. I prayed longer and more earnestly that night than ever before. When I was finally finished, I crawled into bed and, feeling completely drained, leaned back against my pillow, staring into the darkness that surrounded me.
It was then that I received my answer. It came clearly and distinctly, a soothing response to my prayers and heartache. Not only should we place Abby Ruth in the state training school, we need not worry about her. She would understand why we made the decision to place her in the school.
Perhaps other parents in a similar situation would have received different direction. I only know that our answer came from Heavenly Father, and we trusted that He knew our situation and had inspired us to act appropriately.
On 1 November 1980, Abby became a permanent resident at the state training school. We’ve never regretted having her home with us as long as we did. Because of that, she became an integral part of our family.
As I look back on the events in our lives that led up to Abby’s birth, I realize that Heavenly Father helped make the trial as easy as possible to bear. Our ward was filled with loving, caring people and a wonderful bishop. He touched our hearts with the gospel and its covenants. For these blessings, I will be forever grateful.
With our Heavenly Father’s help, we’ve come to look on Abby as our own personal learning and growing experience in love and faith. She has given us extra incentive to strive to be worthy so that our family can be together eternally.