When Chloe, a 22-year-old mother from Arizona, welcomed her second child, a daughter, into the world, she held her close, knowing that their physical connection would be brief. Initially, Chloe had expressed her reluctance to hold her newborn skin-to-skin on her chest.
“I said, ‘No, I don’t want to do that. I don’t want to get attached to her,'” said Chloe, who preferred not to disclose her last name for privacy reasons. “Because I know what the outcome will be.”
Around 23 weeks into her pregnancy, Chloe learned that her daughter had a condition called holoprosencephaly, a birth defect characterized by the incomplete division of the brain into its left and right hemispheres, according to the National Institutes of Health.
Her baby had the most severe form of this condition, known as alobar holoprosencephaly, which often leads to stillbirth or death shortly after birth. When Chloe’s daughter, named Laila, was born on September 20, 2022, she made the decision to embrace her and provide comfort.
“As soon as she came out, I knew that I needed to be the one to comfort her,” Chloe said. “It was undoubtedly difficult because you inevitably become attached, regardless of how hard you try to tell yourself that you know what will happen. You know the outcome.”
Chloe had less than two days with her daughter after a 24-hour induction process and several hours of labor. “She was alive for about 44 hours, and it was incredibly difficult to witness her in pain the entire time,” Chloe recalled. “I tried to shield her from the pain, but she still had to endure it.”
Chloe was surprised but excited when she learned of her pregnancy in January 2022, as it meant her first child, a daughter who was almost six months old at the time, would have a sibling told Daily Mail.
As her pregnancy progressed, Chloe experienced the usual symptoms such as morning sickness, and underwent routine ultrasounds. She was particularly thrilled to discover that she was expecting a girl.
“I was really excited because I wanted two girls close in age,” Chloe shared. “I thought it would be great for them to be best friends but also have a bit of sibling rivalry. Two little divas.”
However, Chloe’s dreams were shattered during a routine ultrasound at 21 weeks. She was informed that there were concerning findings, which led to a visit to a high-risk pregnancy specialist.
Further testing and ultrasounds conducted by a maternal-fetal medicine specialist resulted in the devastating diagnosis of alobar holoprosencephaly. The doctors explained to Chloe that her baby would not survive long after birth if she even made it that far.
Babies born with alobar holoprosencephaly face significant challenges, including severe facial abnormalities, according to Dr. Stephen Chasen, a maternal and fetal medicine specialist at Weill Cornell Medicine. Breathing difficulties and abnormal brain function are common, and the average lifespan of such babies is only a few hours or days.
When Chloe received the diagnosis, she broke down in tears. She had never felt such despair before. “I wanted this baby so badly. I wanted my daughter to have a little sister,” Chloe expressed. “You plan and anticipate this for a long time, and then to have it all taken away and be told that your baby won’t make it, it was extremely difficult.”
Dr. Ravi Gunatilake, the medical director of Valley Perinatal, the high-risk pregnancy clinic where Chloe received her diagnosis, emphasized that alobar holoprosencephaly is typically detected between 18 to 21 weeks of pregnancy. Gunatilake clarified that his clinic provided the diagnosis and comprehensive counseling to