One Mother’s Quest to Comfort Child

My daughter, Rachel, just had her second birthday. She wore sunglasses and delighted in her pink nail polish and pralines and cream ice cream cake. I suffered a mild case of mother guilt for trimming her bangs too short before the party pictures.

Two years ago, I wish I had been able to believe that one day I would be getting a sticky birthday hug from my little girl. At the time, I hardly felt like her mother.

Born with a rare, hereditary skin disorder called epidermolytic hyperkeratosis (I couldn’t pronounce it then, much less spell it), I barely got to see Rachel on that hot July day in 1988.

She was a month premature, and I had complications late in pregnancy--a frightening contrast to the giddy, exhilarating and completely normal birth of my son two years before. This time, I had wanted a girl.

The initial joy in the delivery room was broken too fast by the sounds of Rachel’s screeching, alarming cries and the measured, jargoned professionalism of doctors and nurses who knew there was a problem. I met my baby’s deep blue eyes, for a moment, before she was hurried into the nursery. Midway through my Cesarean, I only vaguely knew things were not right. I assumed her prematurity required special care.

In fact, the situation was critical. Everywhere the pediatrician touched her, the waxy, vernix coating that encased Rachel tore, ripping her skin. Her plastic identification bracelet badly cut her ankle; huge red swaths on her head showed where doctors lifted her from my womb.

My first good look at Rachel was through the window of an incubator in the hallway outside the recovery room; two critical-care nurses and the director of the newborn intensive care unit at Burbank’s St. Joseph Medical Center had come to pick her up via ambulance. My husband, David, and I looked inside at our tiny, wounded baby, helpless.

And then she was gone.

I was wheeled to my room at Verdugo Hills Hospital, ostensibly to recover from what suddenly seemed more like surgery than birth. Nurses from St. Joseph called me with reports: she had an IV and was getting Demerol for her pain; she finally could stop crying and doze fitfully. They took Polaroid photographs so I could study her face.

The professional lactation consultant for Verdugo Hills Hospital, Carol Ann Friedman, came to my room to see if I wanted to try to save my milk for Rachel. A mother herself, with a son close in age to my boy at home, Carol Ann pulled a chair up to my bed to talk. She was sympathetic but practical. Here was something I might be able to do for Rachel, at least for a while, she explained. At the very least, an electrical breast pump could collect my colostrum, the clear, antibody-rich substance babies receive in the first few days of life. Carol Ann assured me it would be given to the nurses caring for Rachel.

I said yes, I wanted to use the pump, but that my real desire was to someday nurse her, if I could. After a rocky start, I had successfully breast-fed my son, Bobby. I had come to know him that way, nestled in the crook of my arm. As he grew, I felt nursing had comforted him when he was frightened or suffered the rare pain of an earache or a bumped head. Perhaps, I thought, there would come a day when nursing would comfort Rachel, who would suffer pain every day.

While the mother in the next room cradled her baby boy to breast-feed, I used the pump every two hours, even awakening during the night to connect myself to the machine. Despite my efforts, there wasn’t much colostrum: a few drops here, a half-ounce there. Even at this, I felt I was failing. Carol Ann appeared every day in my room, assuring me that I was not. Every drop was like gold to an infant, she said, with protective immunities to disease that I had built up over the years.

Still, these were bleak days. I called my parents in Colorado and could not form words. I burst into tears when a well-meaning volunteer came to record the baby’s name. My husband spent most hours watching over Rachel at the other hospital, and I could tell he was trying to spare me details during her bad times.

Two days after my C-section, my understanding doctor allowed David to take me on a pass to the other hospital to see our baby. The wheelchair ride and the trip in the car, the mandatory scrubbing and gowning at the NICU, the talk with Rachel’s doctors, wore me out. But I did get to see her, sleeping and drugged, in the corner incubator. She was huge compared with the other silent preemies: 6 pounds, 9 ounces, her skin slightly golden and shining from salve, her lips pursed in a perfect “O.” We could reach our gloved fingers through a sleeve in the incubator to touch her. Her skin felt warm. I was frightened I would hurt her. She looked angelic, but she did not seem to be mine.

David and I sang lullabies and cooed assurances onto a cassette recording, which we left in the incubator for the nurses to play whenever Rachel awakened.

For the next few days, I returned on the wheelchair journey and we spoke with nurses and doctors and the social worker of bilirubin levels, Demerol doses, new wounds, healing places, hereditary patterns. Epidermolytic hyperkeratosis is inherited, and Rachel had acquired the trait from my husband, whose infancy also was traumatic. In the disease, the skin cells do not pass correctly up through the skin layers, and are not shed easily once they do finally reach the surface. Babies typically lose their skin too easily; when anything touches it, the top layers peel away. The skin develops blisters. Whereas normal people would lose microscopic skin cells in the course of a day as they are replaced by healthy skin cells, people with EK have areas, particularly around their joints, where the skin tightly adheres to the surface, in effect locking them into their skin. Topical medications help regulate the skin flow, but it still must be scraped away with pumice stones. Infections are common, and both the medications and the scraping treatments are painful, especially for babies with sensitive skin. In some people, the condition improves with age, especially around adolescence. In others, it can be debilitating.

Rachel’s case was never as severe as children we had read about, some of whom are badly disfigured. But we faced with her a future of infections, anguishing daily treatments and the burden of a lifelong condition doctors rarely see and do not understand.

At the same time, in those early days we were coming to know Rachel as a child who would grow from being stoic to cheerfully resilient, a doll-like, round-faced girl who would love lullabies and Raffi songs. Her first smiles would be from cotton cocoons we wrapped around her to keep her warm. It would be nearly a year before she could wear clothing, but by her second birthday, she would be able to dance and do somersaults.

At the time, I couldn’t envision a future with Rachel. I felt overwhelming sadness for this baby, but I didn’t feel maternal. A reporter by trade, I still felt detached, like I was on a disturbing assignment.

I continued to pump my milk. It was six days before we could hold Rachel on pillows on our laps, for short times. She was always sleepy, and would not nurse. Maybe it would be best to stop trying, one nurse said gently; she doesn’t have to be held when she gets a bottle, and that might cause her less pain.

Remembering colicky nights when my son, Bobby, was comforted by nursing, and longing to give Rachel some protection, I persisted. Every time I could hold Rachel, I tried to nurse, whispering to her in the busy, clinical ICU, turning my back to the monitors and bright lights.

My pediatrician, Dennis Stobie, understood. After a long, tearful phone call about nursing and a dozen other worries, he arranged for the lactation consultant, Carol Ann, to work with me in the NICU.

She arrived in the afternoon of a very bad day. The NICU doctors were huddled in a conference about another baby’s insurance and closed the unit to parents for so long that David had to go to work without seeing Rachel. Rachel then underwent blood tests to check for infections, and I watched her endure a painful bath. I was aching and discouraged.

A smile on her face, Carol Ann entered the NICU at 3:30 p.m., balancing an armload of sterilized pillows. She fawned over Rachel in her transparent incubator bubble. Then she studied every chair, chose one, and set me up in it with so many pillows I looked like the Pillsbury dough mom. A nurse helped place Rachel delicately next to me, her head in the palm of my hand, her fragile body lying along my side.

Shocked at the cool air outside her incubator and the unfamiliar position, Rachel opened her mouth to scream in protest. At that moment, Carol Ann lifted the pillow holding her head and pressed her open mouth onto my breast. Rachel nursed.

For the first time, I did not feel helpless. Watching her baby gulps, I let myself feel joy for the first time that I had helped create a new little life. There were things to be done: tiny toes to admire, baby sounds to smile at. There would be, someday, candles on birthday cakes for Rachel to blow out.

I looked up to Carol Ann and two favorite nurses, whose eyes were shining with tears. Of course, I cried a little, too. I was, after all, this bright and beautiful baby’s mother.

The only person in our cluster in that stark white world who was not crying was Rachel. Secure, her tummy full, Rachel had fallen asleep.