Born Too Soon: Doctors, Parents Grapple with Life or Death Decisions in the NICU

Andrea Mullenmeister

Jaxson Mullenmeister was born without uttering a sound. His eyes were still fused shut. His skin was translucent.

Then, he managed to squeak out a tiny noise.

“All of a sudden, we heard this tiny little mew,” said Jaxson’s mother, Andrea Mullenmeister. “We were like, ‘Oh my god!’”

Jaxson was born at 23 weeks and three days gestation, in what neonatal ethics experts call “the grey zone” — a point in the pregnancy where the fetus is on the cusp of being viable outside the womb.

With advanced medical treatment and new technology saving the lives of babies born smaller than ever before, neonatologists and parents are forced into a life or death decision: Should we resuscitate this baby on the edge of life or let nature take its course?

James Cummings, a neonatologist and professor of pediatrics at Albany Medical Center, advocates for what he calls a “trial of life.”  

“Let us see how this baby responds to our interventions,” he said. “If it responds poorly, then it’s probably too immature — too periviable or previable —  to survive. And it’s going to prove itself that way.”

About one in ten babies are born prematurely before 37 weeks gestation, according to the March of Dimes, or about 380,000 babies each year. But a baby born at even 32 weeks has a much greater chance of survival, almost that of a full-term baby, than a baby born at 25 weeks, which has just a 50 percent chance of survival. Those born earlier than 25 weeks face much graver odds.

Today, Jaxson is an energetic 6-year-old who’s learning his way around kindergarten. He has been diagnosed with autism and ADHD, and he’s been hospitalized eight times for respiratory failure, most recently over the summer — diagnoses consistent with extreme prematurity.

Andrea Mullenmeister

“He’s the kindest and funniest little boy that you will ever meet,” Andrea said. “He’s got a huge heart.”

It is a life they were told was most likely not even possible when Jaxson was born with a four percent chance of survival.

In the days before he was born, Andrea and her husband had been on vacation about four hours away from their home near Minnesota’s Twin Cities. It was her first pregnancy and it had been healthy and uneventful.

“It was the last day of vacation and I woke up and something was definitely wrong,” she said, adding that while she didn’t feel contractions, she was feeling twinges that left her uncomfortable and uneasy.

Never suspecting she was in labor, Andrea went to the nearest hospital on her way home.

“When the doctor did the exam they could see Jaxson’s foot,” she said. “ My water hadn’t broken yet so he was still kind of in the sac, but clearly my cervix had not worked.”

Andrea was flown by helicopter to a bigger hospital in St. Cloud, Minnesota. Jaxson was born that evening, weighing 1lb, 8oz. He was whisked to the NICU before Andrea could get a look at him. She sent her husband to stay with their son.

“I just remember telling him, ‘If our baby dies he needs to know that somebody loved him,’” she said.

When Andrea first saw her son, five hours after his birth, he was covered in wires and tubes, yet still kicking and flailing.

“They’re like, ‘Just look at him fighting,’” she said. “’He’s got the spirit to live.’”

Andrea Mullenmeister

It’s cases like Jaxson Mullenmeister that keep doctors like Cummings humble.

When Cummings first began his medical training more than three decades ago, the limit of viability was around 28 weeks gestation. As modern medicine has changed, so has his outlook on who can be saved. Now the chair of the American Academy of Pediatrics’ Fetus and Newborn Committee, he helped write new guidelines on neonatal viability that encouraged shared decision making between physicians, providers, and the baby’s family.

“I and other experts, I think, feel that giving a child a chance at life —  even if we think the odds are heavily stacked against it — it’s not because we’re trying to promote life necessarily, but we’re trying to promote the best family-centered outcome,” Cummings said.

Andrea said that while she gave consent for Jaxson’s life-saving intervention before she gave birth, it was done so in a flurry of paperwork she never had time to read. That’s why Cummings encourages those types of life or death decisions to be made after birth.

“The data’s emerged over the last 10 or 12 years that making those kinds of decisions in the delivery room is fraught with error,” Cummings said. Instead, he encourages resuscitation after birth, and a withdrawal of life support later if it becomes clear the child is not responding to medical intervention.

Andrea would like to see more counseling available to the families of these babies born in the grey zone.

“I don’t think doctors can come in, lay the statistics out on the table, and then expect the family to be able to choose,” she said. “There was babies all around Jax who were dying, who were much older and stronger and bigger. And there was just no rhyme or reason to it at all.”

Six years later, they are overwhelmingly thankful.

“Jaxson is really happy and we’re happy,” she said. “My perspective has completely changed on what’s important and what’s not important.”

For a breakdown of the legal rights parents of premature babies have in the US, you can view IJR Red’s reported analysis response here. To read a parent’s first-hand experience of time in the NICU, read Dearly’s companion piece, “I’ve Spent the Last 70 Days in the NICU With My Son. Here’s My Message to Other NICU Parents.”

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