Family grateful for 15 hours of life with newborn who died of anencephaly

Joe and Crystal Ossello braced themselves for perhaps only five minutes to meet their daughter, Harlow.

They got 15½ hours together.

Harlow had a neural tube defect called anencephaly, which means that babies – if they survive in utero – are born without parts of the brain and skull. Surviving infants typically die during birth or within minutes. She also had a bilateral cleft palate and lip, part of the same defect.

Delivered by cesarean section on April 11, Harlow Faith Ossello surprised everyone at MultiCare Deaconess Hospital. She voiced constant coos and responded to touch, as the Ossellos held her the entire time.

“She cooed; she talked – literally the whole 15½ hours,” said Crystal Ossello, 41.

“All she knew was love. I wanted to see her, hold her, for her to know that I loved her. We all loved her.”

Gauze and a hat covered her fragile head. Harlow’s parents bathed her, dressed her in a cute outfit and stamped images of her hand and footprint. Her 3-year-old brother, Tucker, and grandparents got to meet her.

After hours of privacy with her parents, Harlow reached one arm up with a fist before taking her last breath, Crystal Ossello said. She died at 4:27 a.m. on April 12.

After needing a few months to grieve, Crystal Ossello said she now hopes telling Harlow’s story can help other parents facing similar heartache. Being with Harlow gave them closure.

“God and faith really got us through this,” she said. “I was so focused on one day at a time, and on never giving up on Harlow.

“I would tell people if they’re facing a fatal diagnosis, just take it one day at a time and lean on the people who love you. I also encourage people to reach out for support and do their research.”

Joe Ossello described many unexpected blessings.

“Meeting Harlow was the ultimate goal,” he said. “We got to share her also with my parents, and with Crystal’s mom, which is really special. We had been told a lot of anencephaly babies are not very vocal, but she was vocal the entire time. She got to meet Tucker.”

Tucker was born with Down syndrome in December 2019.

“He’s the love of my life,” Crystal Ossello added. “I’d not change this kid for anything because he’s so perfect the way he is.”

After difficulties getting pregnant and a history of miscarriages, Crystal Ossello learned about a year ago she was carrying twins. At 11 weeks, the news turned to sorrow when a checkup revealed one twin had died. Within days, a follow-up ultrasound dealt another blow.

Their surviving twin – Harlow – had the neural tube defect that meant unlikely survival.

“When babies get this diagnosis, this is known to not typically be compatible with life, or if the baby were to live, the baby is not expected to live usually more than a minute or a few minutes,” said MultiCare Rockwood OB-GYN Dr. Lacey Marks, who delivered Harlow.

She said Harlow at birth still had an intact brainstem, which controls functions like breathing and heart rate, but the newborn couldn’t see or hear.

A vaginal birth typically is recommended for the mother’s health, but Crystal Ossello chose a C-section to improve the baby’s chance to survive a delivery, Marks said.

Marks and Crystal Ossello had become friends before she got pregnant with Harlow because she works as a Deaconess receptionist. Marks said she received Crystal Ossello’s permission to share more specific details.

“At her delivery, we were expecting Harlow to die within minutes, so we actually set everything up for Crystal to do a maternal assist with her C-section,” Marks said of the procedure where a mother helps deliver her own baby.

“We also sterilized Crystal’s hands and gave her sterile gloves. Once I started getting Harlow out, we put Crystal’s hands around her, and she actually got to deliver Harlow herself. That was amazing.”

Joe Ossello was in the delivery room, as well.

“I think it gave us a different perspective on how special life is, and how fragile,” he said.

During her high-risk pregnancy, Crystal Ossello also saw maternal-fetal medicine specialist Dr. Elizabeth Platz.

After learning about the neural tube defect, Crystal Ossello said terminating the pregnancy was never an option for them. She and her husband hoped to see their daughter. After her death, they wanted to donate her organs, but then Harlow’s low birth weight didn’t allow that, she said.

At 4½ pounds, Harlow still proved strong.

“The one thing to know about Harlow is that she was a fighter,” Crystal Ossello said. “They say babies with anencephaly are born blind, deaf and don’t feel pain. I definitely feel that they don’t have pain, but they respond to touch.”

Both she and nurses observed her “squawking” and responding when touched, and Crystal Ossello could sense that Harlow knew people surrounded her.

Anencephaly is the most severe among a continuum of diseases known as fetal neural tube defects, which include spina bifida, Marks said. As the brain and spinal cord in an embryo develop as a system, there’s a neural tube, and normally, an area forms around that tube to protect it.

“A more severe problem is called acrania,” Marks said. “Acrania is when the skull does not form on that same continuum, and that’s what Crystal’s baby had.

“Pretty much all acrania babies will turn into anencephaly, because that fetal brain does not have a skull that’s protecting it, so it’s exposed to the amniotic fluid. It gets swollen, and we watched it – it was so sad – slowly over a couple months the brain tissue that was absolutely there essentially dissolved and went away.”

Researchers estimate that one in every 4,600 babies is born with anencephaly in the U.S., according to the Centers for Disease Control and Prevention. The causes are unknown, but some factors might be environmental or a change in genes or chromosomes, the CDC says.

Folic acid supplements before and during early pregnancy can help prevent neural tube defects.

After unsuccessful fertility treatments and miscarriages before and after having Tucker, Crystal Ossello had decided to take a break from trying to get pregnant. She took time off and concentrated on being healthy. Soon, and unexpectedly, she was pregnant with the twins.

Marks said she reassured Crystal Ossello’s concerns that she’d stopped taking prenatal vitamins during that short break, while thinking she couldn’t get pregnant. Once she learned of the pregnancy, Crystal Ossello immediately resumed taking them.

“Plenty of women who are not on prenatal vitamins conceive, and their children do not have a neural tube defect,” Marks said.

The family now has Harlow’s photo on their living room wall, framed by angel wings.

Crystal Ossello said all the couple’s wishes at the hospital were honored, and a bereavement program helped them plan. After Harlow’s death, they got a CuddleCot cooling bed to stay with her as long as possible.

“They let us have all the time in the world that we wanted,” she said. “I feel that we gave Harlow the dignity that she deserved.”