‘M’ is for the many things moms endure

Austin American-Statesman, May 12, 2013

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I can't imagine having the strength to endure neonatal intensive care as a parent.

On Mother’s Day, I think of the moms of the sick and premature babies I cared for in the neonatal ICU for more than 30 years. They all shared these characteristics:
• They and their spouses/partners were sleep-deprived — dead-dog exhausted.

• They were scared.

• Neonatal intensive care was the last place on Earth they wanted to be.

Eighteen years ago, one of my moms had her baby just before Christmas. Three months premature, the baby weighed less than two pounds. The mother was discharged home on Christmas Day. All mothers going home that day received their babies in Christmas stockings. This mom went home with an empty stocking.

When the baby was a few days old, she had a serious bleed into the brain resulting in cerebral palsy. Recently the mom wrote me the child is graduating in the top quarter of her class and had been accepted into college with a merit scholarship. Reflecting back on her days in neonatal intensive care, she said, “Premature babies have premature parents. We were not ready. When we heard about Lindsey’s brain injury, there was so much grief. We wanted it to be over or know that everything was going to be okay. More than anything, I wanted to peek into the future to know that we survived.

“I wasn’t allowed to hold Lindsey until she was two months old. The neonatologist didn’t know I nursed her, and remember, you smiled and looked the other way. I realized then that I could take care of my baby. I could be her mother. I could love her.

“Over the years we’ve had triumphs as Lindsey hit major milestones. We still revisit grief now and then, but our moments of joy are frequent. … I couldn’t be more proud of my daughter. Or myself.”

Moms and dads have told me that with all the alarms, noises, sickness, death and near-death, that the NICU is like a war zone. Some can’t adjust. Marriages fall apart. Some focus anger on the staff.

So many of the NICU moms would ask me how I do what I do. The question always startled me because I can’t imagine having the strength to experience neonatal intensive care as a parent. The worst thing that happened to my three babies was that one of them had a persistent diaper rash. And I don’t think I handled that very well.

During the 1980s, one baby stayed in our unit for more than two years. His parents, who spoke only Spanish, were from South Texas, but were visiting Austin when Pete was born prematurely. His bowel ruptured a few days before he was supposed to go home and most of his intestine had to be removed. As a consequence, his nutrition had to be given long-term through a central venous line that ran into the heart.

Pete’s parents were poor, but rich in ways that many of us can only imagine. They couldn’t visit very often because of his dad’s construction job in San Benito. We bonded with the adorable Pete as if he were our own. Every time I saw him I made this goofy, surprised face, which he learned to imitate perfectly, causing the staff to laugh heartily.

Pete’s parents had only an eighth-grade education, but to this day I remember his mom as one of the smartest women I have ever known. When I taught her how to assist with sterile dressing and line changes, she learned technique faster than most health care professionals.

Outpatient treatment was arranged, and Pete went home to the Rio Grande Valley. He died shortly after his third birthday. Marta and I kept in touch. But after a couple of years, she had a healthy baby girl, and I stopped hearing from her. It hurt, but I came to realize that in Marta’s mind, it was time to move on.

Edith with two NICU graduates, circa 1999.

Mother’s Day reminds me of another very special mom — Edith Simpson, who died in 2002 and had five children of her own. My neighbor as well as my mentor, she helped Dr. Jacob Kay bring neonatology to Central Texas in 1972. In 1975, Edith organized a “preemie reunion” — at her house — where 23 graduates and their families gathered to celebrate with the doctor and nurses who cared for them. Now each spring, hundreds of families gather at a park near Seton Medical Center Austin to celebrate.

Joy, love and pride fill the air at the reunions. The moms are happy to see us and the other graduates. They tell the nurses and doctors how grateful they are. I wonder if they realize how grateful I am to them, for adapting so beautifully and for giving me such a rewarding career.

NICU moms are a source of inspiration to me, a daily confirmation of the ability of the human spirit to overcome obstacles.

Toni Inglis, MSN, RN CNS (retired), FAAN, a lifelong Austin resident, is a retired neonatal intensive care nurse and editor of NursingNews. She also wrote a monthly opinion column for the Austin American-Statesman editorial pages for 10 years.