Her name was Halo, and she was born last week, on March 29, two months early and weighing 3 pounds. She lived for four hours, dying in the arms of her father, Luis Villasana.
Her mother, Samantha Casiano, knew their baby wouldn't survive long because she had anencephaly – part of Halo's brain and skull never developed.
Now, they can't afford to give their newborn daughter the funeral they would like to give her.
'Crushed' at 20 weeks
Casiano got the diagnosis three days after Christmas, at a prenatal appointment when she was 20 weeks pregnant. "I was told that she's incompatible with life," she says. "I was crushed."
She asked her OB-GYN what her options were. Casiano says her doctor told her, "Well, because of the new law, you don't have any options. You have to go on with your pregnancy."
Texas has among the strictest abortion laws in the country, with three overlapping bans. One abortion ban predated Roe v. Wade, another was triggered when Roe was overturned and comes with a maximum penalty of life in prison for providing an abortion in Texas. There's also SB-8, which allows people to bring civil charges for "aiding or abetting" an abortion in the state.
Casiano knew that Texas banned abortions, but she didn't think those laws would apply in a situation where the fetus was certain to die. But the laws do apply. A narrow exception allows for abortions when the mother's life or "a major bodily function" is in imminent danger, but there are no exceptions in Texas law for the diagnosis of a fetal anomaly, no matter how severe. In fact, very few states with abortion bans have such exceptions.
Casiano wishes she could have ended the pregnancy in Texas as soon as she got the anencephaly diagnosis.
"I should have had that choice – that right over my own body and over my daughter's body to be able to tell my daughter, 'It is time for you to rest,' because she was going to end up having to rest anyways," Casiano says.
Impossible logistics
Samantha Casiano is 29 years old. She and Villasana are raising four kids, and a goddaughter who lives with them. Their youngest is 9 months old. They live in East Texas in a mobile home.
After she got the anencephaly diagnosis in December, she called clinics that provide abortions in New Mexico and Arizona, but she couldn't figure out how to make the trip. It would have been at least 700 miles and taken about 12 hours to drive to a clinic in New Mexico – that would have required days off of work and childcare for her kids. "It wasn't possible for us," she says. So she braced herself for five more months carrying a pregnancy that would end in a funeral.
Awful weeks, painful questions
Those weeks were awful, she says. She started on antidepressants. She also began to work remotely — she does document processing for a corporation. "There was no way I could go into the office because I couldn't hear the 'Oh, my gosh, how far along are you?'"
She also had to keep taking time off of work for the frequent doctors appointments that are necessary during any pregnancy. Being in the OB-GYN waiting room was painful. "I didn't want to go to the doctor's office," she says. "I don't want to sound hateful, but I don't want to see all these pregnant women and I'm over here carrying a baby – I love my baby, but she should be at rest by now. I just keep thinking that over and over again – my baby should be at rest, I shouldn't have to put her through this."
In March, she reached out to First Touch Family, a recently founded Christian nonprofit organization in East Texas that supports parents who have lost a child. Founder Chrissy Cogdell, who describes herself and her organization as pro-life, set up a fundraising page for Halo's funeral and paid for professional maternity and birth photos. The fundraiser only brought in $480, Cogdell says.
"Our fundraising effort for her has been not very good," she says, adding that a GoFundMe campaign Casiano's aunt helped her set up also hasn't gone very well either, only garnering one $20 donation in the first weeks. "I think people are scared of it."
Birth, at 33 weeks
Casiano also looked into donating the baby's organs. She thought, "Maybe this is why this is happening, because my baby can save another baby," she says. "I was told that anencephaly babies do not qualify to donate their organs. So I was like, 'OK, I don't see a purpose in this.'"
In the end, her daughter came early, at 33 weeks. Labor was painful, the baby was delivered breech and she needed an epidural. "Some of her brain was not fully developed – when she came out, I was just like, 'Oh my God.' I was just numb."
She says her husband really believed there was a possibility the baby would be OK, but she only lived a few hours. "When she died, it was heartbreaking to him," she says. They each took turns holding her. "Having to see my daughter that way was just so hard."
Post-Dobbs Texas
In addition to the abortion bans, another Texas law that came into effect when Dobbs v. Jackson Women's Health reversed Roe requires all fetal remains to be buried or cremated. It's a law that Molly Duane, staff attorney at the Center for Reproductive Rights, challenged in court in 2017 and succeeded in blocking for years until Roe was overturned.
"Each person should decide what is right for their own family and should grieve in the way that they feel is appropriate and that the state shouldn't be taking away people's choices and forcing them to grieve in a particular way," Duane says. It's the same argument she made in court in 2017.
Duane calls Texas's laws on abortion and pregnancy "hypocritical." "They prohibit abortion even for people like [Casiano] — and they do so unapologetically — while simultaneously not providing any support for women and families," she says.
"Where is the state of Texas to provide the safety net for her, after forcing her to give birth to a child that didn't survive and never would?" she asks.
Duane, who has also spoken to Casiano, is now the lead attorney in a lawsuit challenging Texas's abortion bans announced last month.
'Texas laws are working as designed'
Amy O'Donnell, director of communications for the Texas Alliance for Life, calls Casiano's situation "heartbreaking," but says she supports the abortion bans and opposes creating exceptions for fetal anomalies.
"I do believe the Texas laws are working as designed," she says. "I also believe that we have a responsibility to educate Texas women and families on the resources that we have available to them, both for their pregnancy, for childbirth and beyond, as well as in situations where they face an infant loss."
She says several private and religious organizations provide free caskets and other services, but said public funds for infant funerals is not currently part of the "Alternatives to Abortion" state program. "That's not to say that it shouldn't be, and if the legislature decided to move that direction, we would support that," O'Donnell says.
Duane says Texas has promised those funds before, as part of its defense of the fetal burial law. In that lawsuit, Duane argued that funerals can be expensive. "The state kept promising that they were going to provide all of these resources and grants and all this money for people who needed to have funerals," Duane says. "[Texas] never did any of that. It was all just political theater."
Halo's funeral on Good Friday
Because she went into labor early, Casiano has less time than she expected to sort out how to pay for Halo's funeral. She was quoted $4,000 by one funeral home. The family moved less than a year ago and used up all their savings on the move. Her family cooked menudo, a spicy Mexican soup, and raised $645 selling it by the bowl.
Cogdell, who runs the Christian grief group that's been helping Casiano, says she was able to get several services donated, including picking up the baby's body. In addition to the $480 she raised for Halo's funeral, Cogdell said she used her organization's general family assistance funds to pay for the rest of the funeral, which cost $1,400 in all.
Casiano has the burial scheduled for Friday morning. Because it's Good Friday, she was told it would be an extra $1,100 – she and Cogdell protested and the funeral home agreed to waive it. Even so, she says because she is short on funds, she's going to dress Halo herself and have a simple graveside service with an open casket. Later, she'll try to do a memorial service and put down a headstone. "Ultimately, I just want my daughter buried," she says.
Casiano says she won't get pregnant again – she doesn't want to take the chance of reliving this experience. She wanted to have her tubes tied when she delivered last week, but couldn't because of a Medicaid rule that requires a 30-day waiting period after giving birth. She has an intrauterine device for birth control in the meantime.
She's applied for short term disability and is taking leave from work while she recovers physically and emotionally. Her young kids are trying to understand what happened, she says. "They know she passed away, they understand it," she says, but it's hard – they're emotional about it and have lots of questions. "Now they have to go to a funeral. Now they have to see her. Now they have to really understand what is going on."
Even as she tries to give her daughter the best funeral she can, she thinks she should have been able to get an abortion in Texas months ago. "This whole situation didn't even have to happen," she says.
Have you needed abortion care since Roe v. Wade was overturned? We are interested in your story if you feel comfortable sharing it.
Edited by: Diane Webber; Visual design and development by: Meredith Rizzo. contributed to this story
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