Uncertainty over 'Born Alive' bill stokes fears

When Breanna Villanueva of Kalispell sat down to fill out her ballot, she became concerned about the wording in Legislative Referendum 131, worried it might take the option of palliative or comfort care away from parents who know their baby will not survive.

LR-131, also known as the “Born Alive Infant Protection Act,” requires medical providers take necessary actions to preserve the life of a born-alive infant, or else face the threat of a $50,000 fine and 20 years in prison. The measure goes before voters across the state in Tuesday’s election.

Breanna thought back to the five months she spent in a neonatal intensive care unit with her newborn after his birth at just 25 weeks. A typical pregnancy runs 40 weeks. There were many times when she and her husband, Troy, were unsure if Valentino would make it. From the moment of birth, he was immediately resuscitated and placed on a ventilator.

They watched over the next several months as hospital staff did everything possible to help “Rocky,” his middle name and what he goes by, survive.

At times, it was excruciating to witness.

“We had two failed extubations prior to him being taken off the ventilator, where they would try to take him off of that breathing support and his body would not tolerate it,” Breanna said. “But we had so many challenges in the NICU. He had MRSA in his lungs, and I thought that should have been a death sentence but it wasn't. He also couldn't hear and he was at high risk for retinal detachment. So we thought for a long time, he might be both deaf and blind.”

Rocky was so small and fragile, his skin would easily tear from the medical tape on his face and his eyes were fused shut for a while after he was born.

Watching him crawl around their living room floor these days, it would be hard to guess that Rocky was a “micro preemie,” weighing zero pounds and 15 ounces when he was born. It’s no coincidence they named him Rocky, says Breanna.

She’s forever grateful that her little fighter survived, but she notes that what they went through was difficult. Now around 20 months old, he is fed through a feeding tube and you can still see scars on his hands from his time in the NICU. She said they chose to let Rocky decide if he wanted to keep fighting, but the choices they made for their situation were “extremely personal” — between her and Troy and their medical team. She said she’s concerned LR-131 would take away what little control parents have in these situations.

“I just believe that if I hadn't had the choice, if Rocky didn't respond well to treatment, if I felt like this was becoming inhumane and I just wanted my baby to be able to be outside and feel fresh air for the first time or see sunshine, feel warmth on his face, you know, that was a comfort knowing that I had that choice,” Breanna said.

LR-131 WAS launched from House Bill 167 in last year’s legislative session. HB 167 asks Montanans to vote “yes” or “no” on the statement that infants born alive, including infants born alive after an abortion, are legal persons, requiring health care providers to take necessary actions to preserve their life. Supporters say it’s going to save lives, while opponents argue it’s going to bring the government into already difficult and often traumatizing situations.

The Montana Free Press reports that the bill is similar to model legislation created by Americans United for Life in 2018 as a template for state lawmakers nationwide. So far, 18 states have provisions along those lines, and more are considering them, according to the group. One difference in Montana’s proposal is that there isn’t an explicit clause allowing parents to deny medical treatment if it will only temporarily prolong the infant’s death.

State Rep. Matt Regier of Kalipsell, who sponsored the bill, said the measure is catching Montana up to those states that have passed similar legislation. He doesn’t believe that means the bill will lead to instances of palliative or comfort care being withheld for infants who won’t survive.

“Is hospice or palliative care medically inappropriate or medically unreasonable? Any common person knows that’s a legitimate form of health care,” Regier said. “It says in the referendum that medical providers shall provide medically appropriate and reasonable health care to infants born alive. Hospice is that, so it's very disingenuous of medical providers to inject that it's not. It's really disheartening to see the medical industry against providing medically appropriate and reasonable health care to their patients.”

Regier is referring to language in the bill defined under section four, which states medical providers must provide “medically appropriate and reasonable actions to preserve the life and health of the infant.” As long as doctors are following their hippocratic oath, he said no one should be concerned about going to jail.

Still, many healthcare workers across the state have spoken out in opposition to LR-131. Timothy Mitchell MD is a doctor who works in maternal-fetal medicine in Missoula and he specializes in taking care of women undergoing complicated pregnancies. He often has tough conversations with parents about lethal anomalies during pregnancy and said complications are unique to every family.

“Despite all the types of technologies and medications we have now, there are things that we just can't change the course of. And so, when you create a bill that applies to every single pregnancy the same way, it's really hard, Mitchell said. “It's going to be very challenging to navigate because families want different things. Some families want more and some families want less, and when you put in a law like LR-131, you're gonna have to default to having to do more, and that is not necessarily the right thing for every family.”

He said there’s too much variation and gray area in some of these fields for the state to mandate a measure like LR-131, and though it specifically mentions babies born alive after an abortion attempt, that situation almost never happens. The Centers for Disease Prevention and Control looked at a 12 year period between 2003 and 2014 to find there were 143 infants reported to live briefly after an “induced termination,” though 96% did not survive longer than 24 hours. Mitchell draws issue with this statistic as well, saying that number might actually be even lower due to medical coding discrepancies.

Even though this is a very rare situation, Regier said it’s still worth pursuing the legislation.

“I'd say, even if this never happened, I think this is a standard that we as Montana should take. All infants born alive deserve medically appropriate and reasonable health care,” Regier said.

THERE ARE still concerns among Mitchell and his colleagues that this law will dissuade medical professionals from working in Montana. He said if passed, the bill would leave doctors lying awake at night wondering if they made the decisions to not land themselves in legal trouble. He believes it will lead to less people wanting to practice in the state.

“... We physicians have enough to worry about. We carry the burden of our patients. I carry the concerns and the worries of my patients with me every day,” Mitchell said. “And for physicians that now have to worry like, ‘Oh, my God, is this care that I would normally offer [going to] put me in jail?’ … I do worry about some of these very specialized providers and the ability to recruit them to the state if this law passes.”

Mitchell also worries about the effect on parents like Breanna and Troy, who say they easily could have had a different outcome for Rocky if he did not respond well to treatment. Among her concerns about palliative care, Breanna said she also worries about the financial burden this might put on parents. Rocky incurred almost $2 million in medical expenses during his time in the NICU.

“If you can imagine, our life flight from Kalispell to Salt Lake City was almost $75,000 if we didn't have insurance. So the fact that we would be financially telling parents you have no choice, but to incur $2 million dollars worth of medical expenses, because we have to, by law, try to keep your child alive by any means possible — even though he's failing, even though he's not responding to treatment. I mean, the financial perspective alone is daunting,” Breanna said.

Voters can find out more information about LR-131 and other issues on this year’s ballot, along with polling locations and more online at Montana’s Secretary of State website.