When Chloe, a 22-year-old mom from Arizona, gave birth to her second child, a daughter, she cradled her on her chest, knowing it would be one of the few times they would physically touch.
Holding her newborn skin-to-skin on her chest was something Chloe originally told doctors she did not want to do.
“I was like, ‘No, I don’t want to do that. I don’t want to get attached to her,'” Chloe, who asked that her last name not be used to protect her privacy, told ABC News.” “Because I know the outcome of this.”
Chloe said she learned around 23 weeks into her pregnancy that her daughter had a condition known as holoprosencephaly, a birth defect in which the brain does not divide into two halves, the left and right hemispheres, according to the National Institutes of Health.
Her baby’s specific diagnosis of alobar holoprosencephaly is the most severe type, often resulting in stillbirth or death shortly after birth.
When Chloe’s baby, whom she named Laila, was born on Sept. 20, 2022, she said she decided she had no choice but to hold her daughter close.
“As soon as she came out, I was like, no, I need to be the one that comforts her,” she said. “That was definitely hard because you definitely do get attached, no matter what, no matter how hard you try to tell yourself, I know what’s going to happen. I know the outcome.”
After a 24-hour long induction and several hours of active labor, Chloe had less than two days with her daughter.
“She was alive for about 44 hours, which it was definitely hard to watch her just be in pain the whole entire time,” she said, adding, “It’s like I was trying to keep her from feeling this pain, and she still had to feel it.”
‘I wanted this baby so bad
When Chloe found out she was pregnant, in January 2022, she said she was surprised but more so excited, because a new baby would be a sibling for her first child, a daughter who was nearly 6 months old at the time.
As her pregnancy progressed, with the normalcy of morning sickness and ultrasounds, Chloe said she was especially excited to learn that she was expecting a girl.
“I was really excited because I wanted to have two girls close in age,” she said. “They could be like little besties but also tussle with each other a little bit. I thought that’d be really fun. Two divas.”
Chloe’s dream was halted when she went in for a routine ultrasound 21 weeks into her pregnancy. She said she was told the ultrasound had “red flags” that necessitated a visit to a high-risk pregnancy specialist.
A second ultrasound and additional testing by a maternal-fetal medicine specialist brought the devastating diagnosis of alobar holoprosencephaly. Chloe said doctors told her the baby she was carrying would not survive long after birth if she made it that far.
A baby born with alobar holoprosencephaly would not be able to breathe on their own for long, and would likely never be able to eat on their own, Chloe said she was told.
Dr. Stephen Chasen, a maternal and fetal medicine specialist at Weill Cornell Medicine in New York City, confirmed the difficulties babies born with alobar holoprosencephaly face, including what he described as severe “facial abnormalities.”
“Sometimes there’s only one eye. Sometimes there’s no nose. Often there’s a cleft lip and cleft palate, but the major thing is there’s a very, very abnormal brain function,” Chasen, who did not treat Chloe, told ABC News. “Newborns often will not breathe spontaneously or breathe abnormally, and the average lifespan is hours or days.” Chloe said she “broke down” in tears when the doctor shared her baby’s diagnosis, recalling, “I have never felt that way in my entire life.”
‘I wanted my daughter to have a little sister.’
“I wanted this baby so bad. I wanted my daughter to have a little sister,” she said. “It’s something that you’re planning for, something that you’re thinking about for a very long time, and just to have that all be shut down and [be told], ‘Your baby’s not going to make it.’ It was really hard.”
Dr. Ravi Gunatilake, medical director of Valley Perinatal, the high-risk pregnancy clinic where Chloe received the diagnosis, told “GMA” that alobar holoprosencephaly is typically identified between 18 to 21 weeks into a pregnancy.
“Having an abnormal result [on first-trimester screening tests] and/or having abnormal findings on an early ultrasound performed by her OBGYN is frequently the referral pathway for patients such as Chloe and others like her,” said Gunatilake, a board-certified OBGYN, and maternal-fetal medicine specialist. “So then typically what happens is, we would ideally see that patient relatively urgently within a few weeks.”
Gunatilake said his clinic only provided the diagnosis of alobar holoprosencephaly for Chloe, who went on to be cared for her by her OBGYN throughout her pregnancy.
“This was a situation where we really just performed a single consultation and assisted in the diagnosis and complex counseling,” Gunatilake said of his clinic’s role in Chloe’s medical care. “But the patient was primarily cared for by her OBGYN.”
When Chloe learned of her baby’s diagnosis, she was 23 weeks and four days into her pregnancy, according to her medical records. At the time, she said she was presented with three options: To continue the pregnancy, to try to obtain an abortion in Arizona before 24 weeks of pregnancy, as was permitted by state law at the time, or to travel out of state for abortion care.
“It’s important to understand that in maternal-fetal medicine, we provide objective counseling that’s non-directive, so we don’t advise patients to do anything,” Gunatilake said. “We counsel them regarding their current situation, what the anticipated risks are, and what their options are. We counsel them regarding their anticipated prognosis. If there are ways to improve the potential outcome of the pregnancy, we’ll provide counseling.”
He continued, “In Arizona, if they’re beyond the legal limit and they’ve expressed an interest in the termination of pregnancy, we have the ability to let them know what the legal standards are here in Arizona, and if they are interested in not continuing the pregnancy, most obstetrical providers are aware of legal limits in surrounding states and they may offer that information to patients.”
Carrying a nonviable pregnancy to term
Days after Chloe received the diagnosis, thousands of miles away, in Washington, D.C., the U.S. Supreme Court voted to overturn Roe v. Wade, ending the constitutional right to abortion that had been the law nationwide for almost 50 years.
The ruling returned power back to the states to decide abortion access. In Arizona, began the process of putting into play a 15-week abortion ban with exemptions only for medical emergencies when continuing with the pregnancy would “create a serious risk of substantial and irreversible impairment of a major bodily function” for the mother.
Chloe said prior to the ruling, she asked her OBGYN to induce labor so that she could deliver her baby early and not have to carry her pregnancy to term. While those conversations had been ongoing, she said her doctor told her he would not induce her in the wake of the Supreme Court’s decision.
‘I just felt so stuck.’
“It was like an immediate no, you can’t get an induction to terminate,” Chloe said. “When [my doctor] told me, I couldn’t even get any words out … I just felt so stuck.” Chloe’s OBGYN declined to be interviewed by ABC News. Knowing that she wanted to terminate the pregnancy, Chloe said she made plans to travel by plane out of state for abortion care.
In July, just days before she was scheduled to fly out of Arizona, Chloe said the abortion clinic where she was to be treated canceled her appointment. The reason, she said she was told, was because of threats to the clinic and her own safety after she shared her story on social media.
At nearly 30 weeks pregnant and unable to find an alternate option for abortion care, she continued on with the pregnancy.
“I became extremely depressed, more depressed than I already was,” Chloe said. “Knowing that now I have to carry the baby to full-term when that wasn’t my plan when I found out what was wrong, I didn’t want to leave my bed. I was so emotionally unattached from my daughter, from my relationship, from family, from friends, from everybody. I just wanted to sleep all day.”
Chloe described still having to go on with her life — including working and caring for her older daughter — while dealing with the physical toll that any pregnancy brings, especially this one. “She shakes and seizes inside of me all the time,” she said. “And if I’m uncomfortable with that happening, I can’t imagine how she is inside of there.”