The short life of Baby Milo

What does one do when the law that is blind to both medicine and compassion makes a mother carry a pregnancy though it is clear that the baby can only survive for a few hours?

Baby Milo arrived in the world with no kidneys, underdeveloped lungs and a life expectancy of between 20 minutes and a couple of hours. He lived for 99 minutes. On March 3, 2023.

Mother Deborah and her husband, Lee, had learned in late November that their baby had Potter syndrome, a rare and lethal condition.

As long as their baby’s heart kept beating, the doctors would not honor their request to terminate the pregnancy. The new Florida law on abortion carries severe penalties, including prison time, for medical practitioners who run afoul of it. Everyone knew the baby would not survive. Yet, the parents had to wait for labor to be induced at 37 weeks.

The Dorberts consulted with palliative care experts and decided against trying to prolong his life with high-tech interventions.

The day before Milo was born, the Dorberts sat down with their son Kaiden to explain that the baby’s body had stopped working and that he would not come home. Instead, someday, they told Kaiden, they would all meet as angels. The 4-year-old burst into tears, telling them that he did not want to be an angel.

After Deborah’s 12-hour labor, Milo turned out to be 4 pounds and 12 ounces of perfection, with tiny, flawlessly formed hands and feet and a head of brown hair.

The obstetrician cut the umbilical cord that for 37 weeks had performed the functions Milo’s underdeveloped lungs and missing kidneys would now take over.

Milo remained blue, swaddled in a blanket hand-knit by his great-grandmother. He never cried or tried to nurse or even opened his eyes, investing every ounce of energy in intermittent gasps for air.

For 99 minutes that lasted a lifetime, they cuddled and comforted their newborn. At 11:13 p.m., a doctor declared Milo dead.

At the service, the pastor from a local Lutheran church had a message for the congregation. “Not everything happens for a reason,” she said, echoing Deborah’s own rejection that the manner of Milo’s birth and death carried some special spiritual significance.
 
Deborah wants other people to know what happened, how politicians intervened in decisions about medical care with a law that made doctors fearful of terminating even hopeless pregnancies.

“If it helps another family or a mom, then good came of it because we’re all here to help one another,” Deborah said. “It’s not something easy to go through alone. You need all the support you can get.”

​I am not an expert in medicine or law. But I have a question for my compassionate friends in palliative care. How do you console, how do you care when law blocks your path, and medicine can only stand by?

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This is adapted from the report in The Washington Post. Please read the whole story here. Image from the report.