The short life of Baby Milo

Nobody expected Baby Milo to live for long.

He arrived in the world with no kidneys, underdeveloped lungs and a life expectancy of between 20 minutes and a couple of hours.

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He lived for 99 minutes.

Milo Evan Dorbert drew his first and last breath on the evening of March 3. The unusual complications in his mother's pregnancy tested the interpretation of Florida's new abortion law.

Deborah Dorbert discovered she was pregnant in August. Her early appointments suggested the baby was thriving, and she looked forward to welcoming a fourth member to the family. It didn't occur to her that fallout from the U.S. Supreme Court's decision to overturn a half-century constitutional right to abortion would affect them.

A routine ultrasound halfway through her pregnancy changed all that.

Deborah and her husband, Lee, learned in late November that their baby had Potter syndrome, a rare and lethal condition that plunged them into an unsettled legal landscape.

The state's ban on abortion after 15 weeks of gestation has an exception for fatal fetal abnormalities. But as long as their baby's heart kept beating, the Dorberts say, doctors would not honor their request to terminate the pregnancy. The doctors would not say how they reached their decision, but the new law carries severe penalties, including prison time, for medical practitioners who run afoul of it. The hospital system declined to discuss the case.

Instead, the Dorberts would have to wait for labor to be induced at 37 weeks.

For the next three months, the Dorberts did their best to prepare for their second son's short life. They consulted with palliative care experts and decided against trying to prolong his life with high-tech interventions.

"The most important thing for us was to let him know he was loved," Deborah said.

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, some day, 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.

Without functioning kidneys, a fetus with Potter syndrome cannot produce the amniotic fluid that allows the lungs to expand and that cushions the growing body. The babies who survive until birth typically have contracted limbs, club feet and flattened features from being compressed against the uterus wall.

But 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.

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"When he came out you could hear him gasping for air. He was really trying to breathe. ... He didn't cry when he was born and he didn't open his eyes at all. But I mean, he struggled." - Deborah Dorbert

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"I thought I had my miracle," said Peter Rogell, the baby's grandfather, who attended the delivery. He allowed himself a moment of hope until 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.

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"When they pulled the baby out I thought my miracle happened. 'Cause he looked perfect to me." - Peter Rogell

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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.

"That was the beginning of the end," Rogell said, recalling the persistent gulps that he thought at first were hiccups but turned out to be his grandson's labored efforts to inhale.

Lee read a book to his dying son - "I'll Love You Forever," a family favorite that the Dorberts had given Kaiden for Valentine's Day - and sang Bob Marley's "Three Little Birds."

For 99 minutes that lasted a lifetime, they cuddled and comforted their newborn.

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"The baby just went to my chest, and we just cuddled with him. ... My parents held him for a little bit. And we kinda just gave him all the loving until he passed." - Deborah Dorbert

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At 11:13 p.m., a doctor declared Milo dead.

The nurses took some photos, clipped a few pieces of Milo's dark brown hair and made imprints of his hands and feet on the inside cover of Kaiden's book before taking the infant down to the morgue. Milo's organs were either missing or too damaged to be donated; his body was so small that even his heart valve could not be used to save another baby.

Milo would be cremated, with some of his ashes embedded in a pendant for Kaiden and two spherical glass ornaments.

Deborah feared that mementos would serve as reminders of her pain.

But gradually, she realized she might want something to hold onto, or as a teaching tool for Kaiden.

"Down the road he might have questions," she said, imagining how she might pull out an object to help explain "what I went through, how the laws dictated this."

Two weeks later, about 40 of the Dorberts' friends and family members gathered at Lakeland Funeral Home and Memorial Gardens for a service.

A three-inch-tall silver urn - delivered by Amazon the previous day after other child-sized urns turned out to be too big - sat on a memorial table with two vases of flowers, carefully picked out at a nearby Publix supermarket, and a photo of Milo, wrapped in the hand-knit blanket and held by his parents in the hospital bed.

Deborah and Lee sat rock still and silent in the front row as Milo's aunts and uncles and several cousins walked in and took their seats. Her usually free-flowing hair was pulled back from her face and held in a bun.

The service, which mixed Christian gospels and the Lord's Prayer with "Three Little Birds," lasted about 45 minutes - half as long as Milo's life.

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.

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"Milo. Milo. For such a little love, he leaves a giant hole in our soul and in our hearts. And nobody - nothing else - can completely fill that hole." - The Rev. Pamela Smith

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Deborah occasionally stifled sobs or turned to quiet Kaiden, until she could contain her feelings no longer, and Lee reached over to embrace her slender shaking frame.

Rogell lingered at the funeral home after others left, staring at the urn that contained his 16th grandchild's ashes and trying to reconcile his own misgivings about elective abortion with the months of suffering he watched his daughter and her family endure.

Now, he was haunted by the sound of Milo gasping for air and the sight of his body struggling to ward off a death that had been inevitable for three long months.

"To me it's just pure torture," Rogell said. "The law has created torture."

In many ways, the routines of daily life returned swiftly after Milo died.

Deborah shuttles Kaiden back and forth to preschool. The Dorberts take occasional outings to the aquarium or hike the trails near their house. They visit family.

Deborah held her brother's baby girl, born a few days after Milo - the products of pregnancies that had followed parallel paths until Thanksgiving.

"I'm happy for my brother. He has a precious baby girl that brings so much happiness to his family, and that makes me happy," she said. "Is it hard to see her because my son's not here? Absolutely."

Deborah says she is wrestling with anxiety and depression. She hasn't returned to her part-time job filling Instacart orders. And she still hasn't figured out how to respond to Kaiden, when he asks whether he can see his baby brother.

"We tell him he's something he feels, like the wind. Or we point up to the stars and say he's an angel with the stars," she said. "We're still kind of navigating that question, for him to understand."

Kaiden brought a card home from preschool for Mother's Day. It showed a family of four purple stick figures with bulging torsos - Mommy, Daddy, Kaiden and Baby Milo.

Deborah said her grief is complicated by ongoing anger that her decision to terminate her pregnancy early was thwarted by politicians she has never met and who are not experts about obstetrics.

The mail brings reminders of the Dorberts' new financial burdens, invoices for all the things they wish had never happened: $12,320 so far in medical costs - not including induction and delivery, $7,000 for Milo's cremation and funeral, and $500 for the keepsakes in memory of their son.

The bills keep coming. Deborah estimates that Lee's health insurance will pick up about half of the medical costs, some of which will be offset by a GoFundMe appeal that one of her sisters set up.

The Dorberts have no idea how their grief will evolve, or if they will ever come to terms with losing control over the most painful decision of their lives.

"It's really becoming our reality now," Deborah said. "We don't know what six months is going to look like. We don't know what a year looks like. We're just kind of taking it one day at a time. Because that's all we really can handle, is just taking it one day at a time."

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"If people want to really know how I'm doing, I'm not doing okay." - Deborah Dorbert

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In the midst of that uncertainty, Deborah has endeavored to find some purpose in Milo's short life, sharing the story of her pregnancy as broadly as she can, even as she has watched Florida legislators move to restrict state laws around abortion even further.

It surprises family members to see Deborah take such a public stance.

"I always thought of her as my shy child," Rogell said.

But 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."

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