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Baby Milo’s short life brought emotional stories of other parents struck by loss

May 27, 2023 at 6:00 a.m. EDT
A sample of quotes from readers following the Baby Milo story
(Emma Kumer/The Washington Post)
9 min

The story of Baby Milo’s short life prompted searing reactions from readers, scores of whom emailed The Washington Post, with hundreds more responding on social media.

Last November, Milo’s mother, Deborah Dorbert, learned during a routine ultrasound midway through her pregnancy that her baby had a rare and lethal condition known as Potter syndrome. She and her husband made the wrenching decision to terminate the much-wanted pregnancy. But doctors refused to perform the termination, even though Florida’s new 15-week abortion ban has an exception for fatal fetal abnormalities.

Three months later, in early March, Deborah gave birth to Milo Evan Dorbert, who had no kidneys, underdeveloped lungs and a life expectancy of between 20 minutes and a couple of hours. Milo lived for 99 minutes, making little hiccups as he gulped for air.

After being denied an abortion, a Florida mother watched her baby die

After Milo’s story was told online and in a podcast, a few readers said it was a blessing that his parents were able to hold a living baby, if only for a short time. Others wondered about research that might one day make Milo’s diagnosis survivable. Some were angry and said Milo’s suffering motivated them to become actively involved in defending reproductive rights. A few suggested taking legal action.

For the majority of readers who responded, Milo’s story brought up memories, sometimes from decades ago, of repeated pregnancy loss, stillbirths and infants born with abnormalities who lived just minutes or maybe months.

Here are some of those stories, drawn from interviews with readers who provided poignant accounts of why Milo’s short life affected them so profoundly.

Heidi Schumacher, Shelburne, Vt.

Schumacher sees herself in Deborah Dorbert’s story. The difference, she says, is geographical, between D.C., where she lived when she learned her baby had a fatal abnormality, and Dorbert’s Florida.

It was March 2020, the week before lockdown, when Schumacher went for a routine scan. She was around 17 weeks pregnant with a much-wanted second baby, and she remembers chatting with the technician as she followed along on the screen.

Schumacher, a pediatrician, didn’t see anything wrong, but she noticed that the sonographer seemed a little nervous and left the room, telling Schumacher the doctor would come in.

Schumacher waited for more than an hour, and when the doctor did come in, it was with terrible news: The fetus’s brain had herniated, with cerebral tissue spilling out of the tiny skull. The doctor had already contacted a specialist to help her understand what lay ahead.

Schumacher headed home in a cab, crying so hard that the driver was moved to speak. “I’m not sure why you are upset,” he said, “but God and I will both be praying for you.”

The next day, a specialist walked Schumacher and her husband through all the options, including termination.

“We discussed the science, the medical prognosis, which is how you should be making this decision,” Schumacher said. “Together we made an informed choice, knowing we had options because we lived in D.C.”

It wasn’t an easy choice. Schumacher recalls the day she terminated the pregnancy as the worst day of her life.

“I cannot imagine what it would have been like to carry that pregnancy and deliver that baby,” Schumacher said. “I can’t even imagine.”

Schumacher and her husband later decided to go through in vitro fertilization. They had struggled to get pregnant and they wanted to lessen the chances of facing another genetic anomaly.

Schumacher and her husband, who currently live in Vermont, now have an 18-month old daughter.

Her baby has a deadly diagnosis. Her Florida doctors refused an abortion.

Christine Pacheco, Portland, Ore.

Pacheco has never stopped grieving Julian, the baby with Down syndrome she lost 36 years ago following heart surgery when he was 9 months old.

“I think of him every day,” she said.

The loss of her first baby affected how she raised her second child, a healthy girl who arrived a year later.

“You have this terrible fear that you are going to lose that child,” Pacheco said, recalling how protective she became. “I think every parent does fear that, but it was so much more present for me.”

She never found the right way to respond when people asked her if her daughter was her only child.

“How do you answer that? ‘Yes she is now, but I had one before.’ People look at you as if they wish you hadn’t said that. They don’t know how to respond.”

After reading about Milo, she wondered whether she would have terminated the pregnancy had she known early on that Julian had Down. Modern care has changed the medical prognosis, giving babies like him far longer and healthier lives.

But her experience has cemented her belief in reproductive choice.

“Our current laws are far more cruel than anti-abortionists can begin to imagine,” Pacheco said, speaking of the Dorberts. “The emotional life sentence for this family is beyond words.”

Mick Rankin, Stantonsburg, N.C.

Rankin, who describes himself as “unapologetically pro-life,” blamed lawyers for intervening in a medical decision when he read about the Dorberts’ case.

“I’m a big believer that when it comes to abortion, there should be restrictions,” Rankin said. “I also believe in medical situations, when there is a significant risk to the mother or baby’s life, the decision has got to be between the doctor and patient.”

Milo provided his family some joy at his birth, Rankin said. “Even more so, closure, with having the ability to have a funeral.”

Milo’s diagnosis of Potter syndrome was particularly dire, but Rankin said he also worries that in some instances, abortions are offered even as science is shifting the potential for survival.

Rankin’s youngest child was given only a 5 percent chance of survival when he was born with poorly developed lungs. He and his wife opted for a treatment that was less common then than it is today — ECMO, or extracorporeal membrane oxygenation.

That was 34 years ago, and their son, who served six years in the Navy, now works in computer science.

“Where there’s life, there’s hope,” Rankin said. “That’s kind of the bottom line for me.”

Listen to Post Reports: The short life of Baby Milo

Sarah and Matt, D.C.

In late March, when Sarah was 24 weeks pregnant, her unborn baby was diagnosed with a rare genetic condition called CHARGE syndrome.

She and her husband, Matt, decided to terminate the pregnancy, plunging them into a different sort of turmoil. “Even though D.C. has relatively progressive laws, the ability to get an appointment was extremely difficult because people were coming in from out of state,” Matt said.

It was one of a series of hurdles they faced, even as they drew on resources they know are not available to many other people.

The anomaly had not been picked up on routine testing for chromosomal disorders at 12 weeks or in subsequent genetic testing for a disease both parents carry. Their 20-week anatomy scan gave the first hint of problems, prompting further testing — an echocardiogram at 22 weeks and an appointment for a second opinion at Children’s National Hospital where it became clear their baby had a significant heart defect.

But it was not until the couple’s genetic counselor contacted the lab that did the chromosomal testing and asked it to run a more sophisticated test that they received the diagnosis of CHARGE syndrome, a condition that results in a wide range of life-threatening birth defects including sight and hearing loss, swallowing and breathing problems, and severe developmental delays. (The couple paid $3,000 out of pocket for whole exome sequencing, a genetic test, after their insurance refused to cover it.)

At 24 weeks, Sarah was already beyond the 22-week cutoff for abortions at the hospital they were using. Realizing that D.C. facilities were swamped, they looked into options in New Jersey and as far away as Oregon. “It was utter chaos,” Sarah said. “My mom was calling clinics up the East Coast and across the country.”

After several days of calls to friends and friends of friends, they secured an appointment. Sarah underwent the procedure at 25 weeks and six days, one day before another hurdle would have reared up: that hospital’s requirement for a review by its ethics board at 26 weeks.

The couple requested that their last name be withheld to allow them to grieve their unborn son in private. His due date would have been July 9.

Rick Tietz, Bend, Ore.

As an emergency room doctor, Tietz sees death on an almost daily basis.

But he is still haunted by the memory of his son, Zachary, born 33 years ago with such severe chromosomal abnormalities that Tietz and his wife decided to forgo invasive heart surgery that might have prolonged his life, take him off oxygen and let him die.

Tietz is haunted, too, by the insensitivity of medical professionals who brusquely informed the couple that parents often blame each other and that they had a 75 percent chance of getting divorced.

Tietz’s wife, JoAnn, became pregnant again about a year later, only to discover through genetic testing that that fetus also had severe abnormalities. The couple decided to terminate the pregnancy, a decision Tietz said relieved them of what would have been an excruciating experience for them both — and especially for his wife — of watching a second baby die.

“Thank God — it’s so moving to me now — thank God, we had the opportunity to have an abortion,” Tietz said. “Had we experienced another death, it would have killed us.”

The personal trauma plunged the two of them into depression and left Tietz, who today is close to retirement, with a lifelong commitment to lessening suffering “by at least being sensitive.”

He and his wife have two grown children adopted from South America. “We wanted to help and make a difference,” Tietz said, becoming emotional as he described his pride in his son and daughter. “They have given us so much joy.”