When Mariella Aitana Guerrero was born on a Saturday afternoon in early September, she was 6 pounds, 18 inches. She had dark hair and long eyelashes — and her life expectancy was measured in minutes.

The newborn that arrived at St. Luke’s Health-The  Woodlands Hospital, just north of Houston, had anencephaly, a neural tube defect. The condition causes the baby to have only a rudimentary brain stem, with parts of the brain and portions of the skull missing.

Wrapped in a white blanket with turquoise and red stripes and a tiny pink cap placed on her head, Mariella was placed in the arms of her mother, Yessica Guerrero, 35. 

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The first thing the mother noticed, she said, is that the child wanted to live.

“She had the strongest grip; she wouldn’t let go of me or my mom,” Guerrero said. “She was not crying, but she did make noises, which we didn’t think she could. She was able to eat — I could hear her belly — so I knew she was hungry, so we gave her a feeding tube.”

Guerrero was nearly giddy with joy that Mariella was clearly alive, even wetting her diaper. For the next 28 hours, family members and friends took photos, made copies of Mariella’s hand and footprints, got her baptized and changed her clothes several times. 

“At one point, I told my husband I felt her heart stop, and I remember hugging her and telling her it was OK for her to go; I just want you to rest, to be at peace,” the mother said. “She let out a little scream, then her heart rate was up again. She was not ready to go. She fought and fought.”

Then at 5:28 p.m. on Sept. 8, just 28 hours to the minute after her birth, Mariella died. In a bizarre twist of fate, she was Yessica Guerrero’s second baby with anencephaly. The first, Gabriella, died at birth on Aug. 7, 2017.

The Kate Cox debate

Nearly a year ago, Kate Cox, another Texas woman pregnant with a handicapped child, created headlines by petitioning a Texas court to end the life of her fetus because the child had Trisomy 18, a birth defect that many in the media were calling a “lethal abnormality.”

Because Texas forbids nearly all abortions, Cox ended up flying out of state to abort her daughter at 20 weeks. She ignited a national debate as to whether severely handicapped children should be aborted and whether such pregnancies endanger their mothers’ mental and physical health. This debate has been reignited this fall as Vice President Kamala Harris, who favors expanding abortion rights, runs for president. In a post-Roe America, she has made abortion a central part of her party’s platform in the race against former President Donald Trump.

While many politicians were overwhelmingly in favor of Cox’s decision to abort, former Pennsylvania Sen. Rick Santorum posted a photo on X of his teenage daughter Bella in a frilly white dress with a bun and circlet of flowers atop her head. His point was that his daughter’s Trisomy 18 wasn’t necessarily “lethal.”

“My heart goes out to the Cox family,” he wrote. “I will pray for them during this difficult time. I don’t know all the details, but I do know that as a father of a 15-year-old with Trisomy 18, accepting the cross of such a baby is the hardest and most wonderful thing I have ever done.”

No publicity has gone to women like Guerrero who have chosen differently than Cox (who has since announced she is pregnant again). A soft-spoken woman who is an office manager of a dental office in the Houston suburb of Tomball, Guerrero and her husband, Rubén, were volunteers at their Catholic parish. The Catholic Church opposes aborting the handicapped unborn on the grounds that all life — no matter how disabled — has “inherent dignity.”

Guerrero asked a deacon to baptize the deceased Gabriella, not knowing church doctrine limits its sacraments, like baptism, to the living. (Miscarried and stillborn children can receive a blessing).

“When they told me on the phone they wouldn’t baptize her, I couldn’t believe that” she recalled. “I  put her in a beautiful white gown, and I had some holy water, so we did it.”

The couple, who already had a boy and a girl, wished for more children. Four years ago, they had twin boys.

Earlier this year, soon after the Cox incident, Guerrero was told she had a large cyst on her left ovary. When she returned to the doctor’s office for a second look, it had vanished. Instead, she was told, she was pregnant again.

Her delight and anticipation lasted until the 20-week check-up in May. There, Guerrero was told the unthinkable: This pregnancy too was doomed; her unborn daughter also had anencephaly.

“I was really mad at God when I found out it was happening again,” she said. “There is nothing physically wrong with either one of us. We’ve done all the testing to see if we’re healthy, to see if we could have prevented it and there was nothing.”

Feeling that not only had the Catholic Church betrayed her, but so had God, she and her husband stopped going to church.

“I thought maybe there was no God,” she said. “My husband felt the same way. ‘If there’s a God,’ he says, ‘why did He take my baby?’”  

When she was told the fetus was a girl, Guerrero had to think quickly. Terminations except in the rarest of cases are illegal in Texas, so if she wanted to abort, she needed to book a flight out of state quickly. She grasped for what shreds of faith remained to her.

“They kept on telling me she was incompatible with life, and she could pass at any time,” she remembered. “I asked: ‘Who am I to kill this baby?’ The only one who is going to have a say in this is God. He is going to guide me in all this.”

Two things became clear. She would keep the child for as long as the baby would live, and she would use her crisis to benefit others. Immediately, she launched a GoFundMe to try to raise money for a piece of hospital equipment for stillborn or dying newborns.

Typically, neonatal hospital staff will try to keep such children comfortable during their brief lives. Once the child dies, hospital staff have been known to whisk the baby off to the morgue, to the distress of parents who want to spend more time with the infant. A cooling bed of iced water will slow the decomposing process.

There are two versions: One, manufactured in the U.K. and called a Cuddle Cot, looks like a large, refrigerated basket. It is portable, less expensive (about $3,000) and can be loaned out to families wishing to take their child home for a day or two.

A Caring Cradle, which costs $6,995 and is manufactured in Lakeland, Florida, is a larger unit structured like a bassinet on wheels. It stays in the hospital. The child is placed and swaddled on a cooled gel mat. Guerrero’s GoFundMe campaign has raised nearly $5,000 for a cradle, which will go to St. Luke’s.

An unexpected ally

Some years before, a doctor had tipped Guerrero off to Jennie Drude, 38, of Montgomery, a suburb just to the north of Tomball and the mother of three babies who had died in utero, or just after birth. Two of them had anencephaly.

When Drude’s first child, Dharma, was born on March 31, 2008, she weighed 4 pounds, 8 ounces and was 18 inches long.

“When Dharma was diagnosed, there wasn’t Google, so I looked her condition up at Barnes & Noble and there was a line that kids born with anencephaly are blind, deaf vegetables,” Drude said. “When she came out, she was crying and pink and comparable to my other children in behaviors. They gave her some formula. When my arm monitor went off, she cried, so she could hear. When my husband went to her bassinet, she opened her eyes, so she could see.

“She looked like a normal baby from the eyes down.”

The child had a full head of dark hair that covered the area where the skull cap would be. She lived 21 hours and 22 minutes.

“I made the decision to carry my girls as long as I could,” she said. “I had a great support system, health insurance, awesome doctor, oxygen available for her after she was born — some doctors won’t allow that with babies with neural tube defects. I just wanted to meet them. It was just like meeting my living kids and falling in love with them.”

A second daughter, whose heartbeat stopped in utero, was induced at 20 weeks in 2014. Her parents named her Stella. Drude began researching and found five other women around the country who had had two pregnancies with anencephaly and “hundreds” of women who had had one child with the condition.

At the time, she said, there was almost no support for such pregnancies, so she set up an informal photography business in the Houston area to take pictures of similar children slated to die at birth — or soon thereafter — if the family wanted a memory of their child. (A Colorado-based organization, Now I Lay Me Down to Sleep, also does this service by maintaining a network of volunteer photographers who attend the delivery and provide portraits to parents experiencing the death of a baby).

Drude has since expanded to speaking to nursing programs and medical staff on how to handle parents of newborns who have little or no chance of survival. Since so many of them are aborted, little research, she says, has been done about those children whose mothers bring them to term. A 2022 ProPublica story bears out her assertions.

More than 20,000 U.S. pregnancies ending in stillbirth, yet no national campaign has been mounted to raise awareness — despite an estimate that at least one-quarter of all stillbirths are preventable. Three agencies that could do so — the Centers for Disease Control, the National Institutes for Health and the American College of Obstetricians and Gynecologists — have given out few if any guidelines to expectant mothers on signs to watch for if, say, the baby has stopped moving.

“They say anencephaly is linked to [a lack of] folic acid, but they had not studied it in 30 years,” Drude said. “Researchers don’t tend to research this.”

When Guerrero broke the devastating news to Drude of her second anencephalic pregnancy and how she felt pressured by her medical team to abort, Drude recommended she switch to Dr. Stacy Strehlow, a maternal fetal medicine physician with the Baylor College of Medicine with privileges at St. Lukes/Woodlands.

Strehlow said the pressure tactics Guerrero experienced worry her.

“It’s important to me and my colleagues that we are as nondirective as possible, and our patients know their options,” Strehlow said. “If they are not interested in termination, it’s off the table and we won’t talk about it.”

Anencephalic pregnancies are not life-threatening for the mother, although labor tends to be slower because the decreased head size doesn’t dilate the cervix enough to quickly deliver the rest of the baby — or as was the case with Mariella — the child is born breech. Where their forehead should be is where the head slopes back, usually covered by a flap of skin and often hair.

“They have a face and eyes, but for someone who is not prepared, it can be pretty shocking,” the doctor said. “So, I help people to be prepared, because it’s a baby.”

But Guerrero was square on the traditions of her church in bringing both daughters to term. Pope Francis, one of few religious leaders to speak out on the abortion of handicapped fetuses, said in 2019 such abortions were “inhuman eugenics.”

He added, “Is it legitimate to take out a human life to solve a problem?”

Families should welcome the chance to embrace the weakest of children, he said and children who could die at birth or soon thereafter should receive “extraordinary pharmacological, surgical and other interventions.”

Moreover, “Human life is sacred and inviolable and the use of prenatal diagnosis for selective purposes should be discouraged with strength,” the pope said.

He was speaking at “Yes to Life: Caring for the precious gift of life in its frailness,” a Vatican conference comprising medical professionals, bioethicists and laity from around the world to discuss support for parents expecting a baby with grim prospects.  

One of the panel moderators at the conference was Amy Kuebelbeck, a news copy editor for the Minneapolis Star-Tribune and a Catholic whose 2003 book “Waiting with Gabriel: A Story of Cherishing a Baby’s Brief Life” was about the 1999 death of her son from hypoplastic left heart syndrome.

Kuebelbeck found such little support for parents like her that she founded perinatalhospice.org to help parents like herself and to list hospitals willing to provide palliative care for a newborn who’s expected to die within a few hours or days. Her list has grown to 273 perinatal centers, covering most states — with the exception of Maine, New Hampshire and Wyoming — and the District of Columbia along with 96 centers in 28 other countries.

On the site, she argues that bringing these pregnancies to term in beneficial, not harmful to the mother.

“There is no research to support the popular assumption that terminating a pregnancy with fetal anomalies is easier on the mother psychologically,” Kuebelbeck wrote. “In fact, research to date suggests the opposite.”

The meaning of strong

Both Guerrero and Drude said they brought their pregnancies to term so they could meet their children, if only for a few minutes. For Guerrero, that decision also involved her oldest daughter, Isabella, 13, who couldn’t stop holding her dying sister. Isabella, who was 6 years old when Gabriella was born, never got to behold her first sister alive.

Isabella, her mother said, had known nothing but loss in recent years. A beloved grandmother had moved out of the country, two of the family’s pets had died one after another, a therapist she’d turned to abruptly left her and now she was losing Mariella. 

The 13-year-old did what sisters do: painted the baby’s nails and toes for the first and last time.

Isabella has since decided to take up playing the harp as a way to work out her sorrows through music. She is trying to raise money for lessons and harp rental.

Her mother has decided she too may make some changes, starting with finding a new church. She has been exploring a nearby nondenominational church.

“I am trying to find that bond again,” she said. “The Mormons have been coming here to the house. My doors are open to everyone. I want to get to know God again. I have felt so lost and alone. I need a little guidance now.”

Surely, she said, there’s something from the births of both daughters, born seven years apart — one on Aug. 7 and the other on Sept. 7 — that she’s supposed to learn from.

“I’ve been thinking why she came to me, why this happened two times,” she said. “I think this happened for a purpose. I’d like to help other moms who are pregnant. I love babies. Pregnancy can be scary, especially when they tell you the baby is not going to make it or there is something wrong with your baby.”

Her dream is to eventually leave her office manager job and enroll at a sonography technician school so she can perform ultrasounds for pregnant women. She has no idea how she will afford the two-year program.

“We have four kids, and it will be hard,” she said. “If we have to get their clothes from garage sales, we’ll do it.”

She said she will never forget the brief time she spent with her third daughter, how she told her she couldn’t find a cure for anencephaly, but she’d share Mariella’s story, focusing on parents who are experiencing the same thing, and raising enough money for at least one Caring Cradle so parents can spend more time with their baby.

“We talked all night,” Guerrero said. “I was telling Mariella, ‘I survive this once with God and I thought I was strong. But you showed me the real meaning of strong. You fought. You didn’t quit. And I will do the same for you.’”

Julia Duin is a Seattle writer and author of seven books. Her fourth book, “Quitting Church: Why the Faithful are Fleeing” (2008), lists singles as one of the top unchurched demographics in contemporary religion.