Ren and the art of Motorcycles

Sunday, August 06, 2006


Pregnancy is a very exciting time in a woman's life. Wondering about the little life growing inside you...what the baby looks like at each step of the way. One place NOT to work when pregnant is in a high risk newborn nursery, because you don't wonder what a baby looks like at 18, 20, 25 weeks know all too well what they look like. And you don't wonder what this anomaly looks like, because you know. Learning what one anomaly looked like is how I met unforgettable Rose.

Arriving at work one night during my pregnancy, a normal report was given by the evening shift. I was the charge nurse that night. As the evening nurses departed, happy to be going home, I began to check the empty warmers and isolettes in the NICU area. The admissions nurse checked her cribs under the warmers, knowing there were 4 women in labor, at term, all normal and no known complications.

As we settled down to the night shift routine, we heard the ominous intercom buzz...neonatal emergency in the delivery room. Hurriedly, we prepared for a sick baby, wondering what was going on. We had the warmer set up and the crash cart open when the doors flew open and the labor and delivery nurse ran in with the baby in her arms followed by the house resident on call. The nurse carefully laid the baby down on the warmer and we gathered around...a pink, breathing, term baby....but what is called a "FLK" in hospital speak---funny looking kid. Generally, the term is used when you know something is wrong with a baby but don't know exactly what the specific syndrome/anomaly is. This term, baby girl had a cleft lip and palate, extra and fused fingers and toes, low set ears, slanted eyes, and an odd shaped head.

While the resident called the pediatric attending on call, I went through our admission procedures. The baby was tachypnic (breathing too fast) but otherwise looked stable. On the doctor's orders, I started an IV and checked the baby's blood sugar, which was normal. When the baby's father came in, we were able to tell him physically the baby was fine, but there was something wrong with the baby, and we weren't sure what it was. Later, when the mother came in, she was able to hold and cuddle the baby. The baby remained stable all night long, but we were unable to feed her with the severity of her cleft palate.

Most babies cry at birth, and afterwards, with all the procedures done. Rose never cried, all night long. At the most, she winced when I pricked her heel for some blood tests. Otherwise, she laid in the warmer quietly. When I left her in the morning, I said I'd see her that night (I always talked to the babies I cared for).

That night, I went in and found Rose was gone...transferred to the Big Well Known Children's Hospital for care. She had been stable, but testing during the day had found more things wrong with her internally than were right. Her mother had been discharged that day to go with the baby so no one really knew what was wrong with her.

One month later, I came into work and found Rose was back from the Children's Hospital, to remain with us until she was stable enough, eating well enough, to go home. Her diagnosis was Trisomy 13 and, with her internal problems, she had a life expectancy of 3-4 months. She still was a happy baby...never crying and watching everything with dark alert eyes. She was a joy to care for, even with the sadness of knowing she was going to die. Her parents were with her frequently, learning to care for her, feeding her and loving her. Their first baby, and parenthood was not the joyous happy time they had expected. But Rose brought them joy and they were as happy as they could be given the circumstances.

Rose went home after a week in our hospital. Her parents kept in contact and sent us a letter when Rose died, at 3 months of age. In her letter, her mother commented on what a happy baby Rose always was, smiling, and that she died with a smile on her face.

Rose, and her parents, taught me how parents can cope and love, even when their hearts are breaking. I've never forgotten Rose, or her parents.

Addendum: Two years later, while working in labor and delivery in a different state, I was the nurse when a patient was admitted in labor. Rose's mother and I recognized each other with astonishment and joy, and I remained with them as she delivered a beautiful, healthy baby boy.


  • At 7:18 AM, Blogger Soapbox mom said…

    This is a beautiful story. Thank you for posting it.
    Most touching is the love that Rose's parents have for her, their first-born. Makes me stop and think about how lucky I am, and how lucky Rose was, to be showered with love.


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