Then 22-year-old mother Chloe from Arizonagave birthFor her second child, a daughter, she held her to her chest, knowing it would be one of the few physical encounters they had.
At first, Chloe told doctors she didn't want the newborn's skin pressed against her chest.
"I was like, 'No, I don't want to do it. I don't want to be tied to her,'" Chloe told ABC News, asking that her last name not be used to protect her privacy. " "Because I know the outcome of this case."
Chloe said she found out around 23 weeks into her pregnancy that her daughter had a condition called holoprosencephaly, a birth defect that prevents the brain from dividing into left and right hemispheres.National Institutes of Health.
Her child was diagnosed with lobeless anencephaly, the most severe type, which usually results in stillbirth or death shortly after birth.
When Chloe's baby, named Lila, was born on September 20, 2022, she said she decided she had no choice but to hold her daughter close.
"As soon as she came out, I said, no, I'll be her comforter," she said. "It's definitely hard because you definitely get attached, as much as you try to tell yourself, I know what's going to happen. I know the outcome."
After 24-hour orientation and several hours of active labor, Chloe spent less than two days with her daughter.
Made possible by Chloe
“She was alive for about 44 hours and it must have been hard to see her in pain the whole time,” she said, adding: “It was like I was trying to stop her from feeling this pain, but she was still feeling it. .”
"I really want this baby"
When Chloe found out she was pregnant in January 2022, she said she was surprised, but even more excited that the new baby would be a sibling to her first child, her then almost 6-month-old daughter.
As the pregnancy progressed, as morning sickness and ultrasounds returned to normal, Chloe said she was especially excited when she found out she was expecting a girl.
"I'm really excited because I'm going to have two girls around the same age," she said. "They can be like friends but also fight each other. I thought it would be fun. Two days later."
Chloe's dream was abruptly interrupted when she went for a routine ultrasound at 21 weeks pregnant. She said she was told the ultrasound had "red flags" and she needed to see a high-risk pregnancy specialist.
Made possible by Chloe
A second ultrasound and further examinations by maternal and fetal medicine specialists yielded the devastating diagnosis of alobar holoencephaly. Chloe said doctors told her that if she did this for so long, the baby she was carrying wouldn't live long after birth.
Chloe said she was told that babies born with anencephaly would not be able to breathe on their own for a long time and would probably never be able to feed themselves.
dr. Stephen Chasson, a specialist in maternal-fetal medicine at Weill Cornell Medicine in New York, confirmed birth difficulties for babies with alobar anencephaly, including what he called severe "facial abnormalities."
"Sometimes there's just an eye. Sometimes there's no nose. Often there's a cleft lip and cleft palate, but mostly the brain is functioning very, very abnormally," Chasen, who did not treat Chloe, told ABC News. "Newborns tend not to breathe spontaneously or breathe abnormally and live an average of hours or days."
Chloe said she "cried" when doctors told her her child's diagnosis, recalling: "I've never felt like this in my life."
- I want my daughter to have a younger sister.
"I want this baby so much. I want my daughter to have a little sister," she said. "It's something you plan for, something you think about for a long time, only to have everything shut down, [to be told], 'Your child is not going to make it.' It's really hard."
dr. Lavigne Tilek, medical director of Valley Perinatal, the high-risk pregnancy clinic where Chloe was diagnosed, told GMA that alobar holoprosencephaly is usually recognized between 18 and 21 weeks of pregnancy.
"Abnormal results [on first-trimester screening tests] and/or abnormal results on an early ultrasound performed by her gynecologist are often referral pathways for Chloe and other patients like her," says Gunatilake, a board-certified OB/GYN and Fetal Maternal Specialist. medicine. "So we usually get that patient in within a few weeks with relative urgency."
Gunatilake said his clinic only gave Chloe a diagnosis of unlobed holoprosencephaly, and her obstetrician continued to care for her throughout her pregnancy.
"In this case, we just did the consultation and helped with the diagnosis and the complex consultation," Gunatilake said of her clinic's role in Chloe's medical care. "But the patient was primarily cared for by his obstetrician."
Chloe was 23 weeks and 4 days pregnant when she learned of her baby's diagnosis, according to her medical records.
At the time, she said she had three options: continue the pregnancy, attempt an abortion in Arizona before 24 weeks, which was allowed under state law at the time, or go for an abortion out of state.
"It's important to understand that in maternal-fetal medicine, we give non-prescriptive, objective advice, so we don't advise patients to do anything," Gunatilake said. "We advise them on their current situation, what the expected risks are, what their options are. We inform them of their expected prognosis. If there is a way to improve the potential outcome of the pregnancy, we will advise them."
He continued, "In Arizona, if they are over the legal limit and express an interest in terminating the pregnancy, we have the ability to tell them what the legal standards are in Arizona and if they are interested in not continuing the pregnancy, and most obstetricians inform patients of the legal restrictions in surrounding states and can provide that information to female patients."
carries an unviable pregnancy to term
Thousands of miles away in Washington, D.C., USA, days after Chloe was diagnosed.Supreme Court votes to overturn Roe v. Wade, ending nearly 50 years of constitutional abortion rights that were legal across the country.
The decision returned to the states the power to decide on access to abortion. This started in ArizonaA 15-week abortion ban was introducedExemptions for medical emergencies during pregnancy carry a "serious risk of significant and irreversible impairment of the mother's essential bodily functions."
Chloe said that before the verdict, she asked her gynecologist to induce labor so that she could start the pregnancy earlier and not have to carry the pregnancy to term. While these conversations were going on, she said that the doctor told her that he would not seduce her after the Supreme Court verdict.
"I just felt trapped."
"It's like a moment of no, you can't stop the urge," Chloe said. "I couldn't even say anything when [my doctor] told me... I just felt stuck."
Chloe's gynecologist declined to be interviewed by ABC News.
Knowing she wanted to terminate the pregnancy, Chloe said she planned to fly abroad for abortion treatment.
MORE: Couple opts for abortion after fetus diagnosed with rare genetic disorder
In July, just days before she was due to fly out of Arizona, Chloe said her abortion clinic canceled her appointment. She said she was told the reason was to jeopardize the safety of the clinic and herself after she shared her story on social media.
When she was almost 30 weeks along, she continued with the pregnancy because she could not find an alternative to abortion treatment.
"I became extremely depressed, more depressed than ever," Chloe said. "Knowing that now I have to bring my child to an appointment and that it wasn't my plan, I don't want to get out of bed when I find out what's wrong. I've become emotionally estranged from my daughter, from my family relationships, from family, from friends, from everyone. I just want to sleep off the day."
Chloe said she still has to get on with her life - including working and looking after her eldest daughter - while dealing with the physical toll of any pregnancy, especially this one.
The whole time she was shaking and clutching her heart, she said. "If I'm uncomfortable with what's going on, I can't imagine what she's like in there."
Made possible by Chloe
She also described what it's like to be visibly pregnant in public.
"When I go to the store, things like that, people see me and ask innocent questions like 'oh, are you having a boy or a girl? When are you due?'" she said. "I was stuck. I was answering questions, but in my head. I was like, you know, this is a baby that's never going to live."
Chloe said she got a job while she was pregnant to force her out of the house, but she also worked night shifts to avoid seeing people.
It's not uncommon for patients to struggle emotionally with a fetus that may not survive birth, Gunatilake said.
"As experts in maternal-fetal medicine, we know that these patients are at greater risk for severe depression, anxiety and subsequent post-traumatic stress disorder," Gunatilake said. Refer them to a perinatal clinic.”
He continued: "We would expect Chloe to be at greater risk when she experiences some degree of mental health deterioration due to the very high risk of her pregnancy."
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Medical records show that Chloe was treated by an obstetrician during her pregnancy and was treated for anxiety and depression in the weeks after giving birth, as well as postpartum depression.
Chasen said that in states like New York, where abortion care is legal, doctors like him are trained to offer patients all options.
"Doctors like me don't tell patients to abort and we don't tell patients what we would do if we were them, but we give them information," Chasen said. "In my experience, most patients, when they're told they're carrying a child that won't survive, or might survive, but brain function is absolutely irrelevant, alone, why would I continue with such a pregnancy?"
He continued: "So we don't recommend abortion, but we all feel strongly that it's a choice a person should have."
When Chloe gave birth to her daughter on September 20, she said it was an unexpectedly easy labour, hearing Leila's cries as she came into the world.
As is common with babies with alobar holoencephaly, Leila was born with facial deformities, including a cleft palate.
"She came out crying and my doctor and everyone else were very surprised because that doesn't happen to babies with her condition," Chloe said. "But we could see that her breathing had stopped, which is not normal."
After a day in hospital - during which Chloe said she was told not to feed Laila for fear of suffocation - they were moved to hospice. Chloe said that early in her pregnancy she decided not to take unusual steps to keep Leila alive.
"It was never something I was interested in because it was a poor quality of life in my opinion," she said. "There was nothing she could do but lie there and be forced to live, and I felt strongly that that was not something I wanted for any child."
She continued: "Obviously I did a lot of research into what I was doing and my options before I made my decision."
north east photographer
After entering the hospice, Chloe said her daughter's condition quickly deteriorated.
Chloe said that although she and her newborn daughter spent almost two days together, it wasn't a happy time or a natural bond. She described their time together as "peaceful, but also ugly".
"When I think about it, I think I knew she was struggling," Chloe said of Leila. - I thought she was going to scream because she couldn't eat.
"Just because there are so many things I want to do for her that I can't, it's definitely hard to think about," she continued. "I knew that if I did these things, I would prolong her life and her suffering at the same time."
MORE: Women's health doctors say they're feeling more circumspect amid abortion ban
Chloe said she was able to take photos with her daughter in hospital and received souvenirs such as Leila's butterfly handprint and hospice footprints.
In the weeks following her daughter's death, Chloe said she was in psychological distress.
"I went to the doctor about two weeks after giving birth and I said, 'I have to take some kind of medicine. I don't feel good. I don't want to have these horrible thoughts anymore,'" she recalls. "So I've been on medication ever since and it's been really, really helpful."
However, Chloe said she struggled to hold down a job and raise her eldest daughter.
"I'm just going through things," she said. "I don't want to be the attentive parent that I want to be, it's horrible because I just want her to remember me as a happy, hardworking parent, but I don't have time."
Made possible by Chloe
Chloe, who carried her daughter to term and 44 hours after giving birth, said that if she had to do it all over again, she would still choose her original option - termination of pregnancy.
"I'm going to quit, because I know now, from what I'm seeing, it's not fair, and it wasn't fair to her or me," Chloe said. - If I could stop, I would.
She added of her decision: "As a mother, you want to be able to see your child thrive and she was born, absolutely nothing blossomed. Even if I had decided to save her, that would never have happened."