PROSPECT HEIGHTS — Cristian Ortiz and his wife Crystal Rivera-Velez lost their baby daughter Valentina on Dec. 8, 2021. Rivera-Velez’s pregnancy seemed normal — right up until birth. In a heartbreaking twist for the couple, their baby was stillborn.
Even more heartbreaking, they learned that Valentina’s death could have been prevented.
But Ortiz and Rivera are taking their devastating loss and channeling it into helping others.
The couple has founded a nonprofit organization, Valentina’s Voice, named in memory of their daughter, to provide services to parents of stillborn children.
The aim of Valentina’s Voice is twofold: to pay for a perinatal autopsy for any parent seeking a determination of their baby’s cause of death and to send autopsy data to research centers to further the study of stillbirths.
Valentina’s Voice is working with the University of Michigan and the University of Utah (both of which are developing databases), as well as organizations like the Star Legacy Foundation.
“We want to make sure that we’re getting clean data for researchers to grab and to research and develop ways for us to do things better during prenatal care,” explained Ortiz, an account development manager at DeSales Media Group, the ministry that produces The Tablet.
Valentina’s Voice is currently engaged in a fundraising effort with an eye toward starting the autopsy funding program sometime in 2024. The goal is to raise $100,000.
“We’re hoping to do at least 50 perinatal autopsies in our first year,” said Ortiz, who is the founder and CEO of Valentina’s Voice. Rivera-Velez, who works in the human resources department at the Veterans Health Administration, is chairperson of the board.
Valentina’s Voice, whose executive board includes doctors and parents of stillborn babies, is also seeking to dispel myths.
“We’re interested in changing the narrative on autopsies,” Ortiz said. “People have a very morbid idea of an autopsy — very dystopian. And it’s not that at all.”
For example, the baby’s body is not mutilated in any way, he explained. The procedure involves a tiny incision. “You can still have an open casket,” he added.
Valentina’s Voice also works to clear up any confusion about stillbirth — exactly what it is and how prevalent it is.
According to the March of Dimes, the definition of stillbirth is when a baby dies in the womb after 20 weeks of pregnancy. In most cases, the death occurs prior to the mother going into labor. However, a small number of deaths take place during labor and birth.
According to the U.S. Centers for Disease Control and Prevention, there were approximately 21,000 stillbirths in the U.S. in 2020. In New York State, there are 1,400 stillbirths a year.
October is National Pregnancy and Infant Loss Awareness Month.
For Ortiz, creating Valentina’s Voice is a way to help him cope with the loss of his daughter.
He often recounts the events before and after Valentina’s death, particularly the fact that Rivera-Velez had a normal, uneventful pregnancy — right up until the end.
“You have months of waiting and you’re told your child is doing OK. And then you show up for delivery and you’re told there’s no heartbeat. I still can’t wrap my head around that,” he said.
While Valentina’s cause of death (prior to an autopsy) was listed as umbilical cord compression, the couple later learned that the baby actually had intrauterine growth restriction (IUGR), a condition in which the baby’s growth is stunted.
IUGR could have been diagnosed during Rivera-Velez’s pregnancy with an ultrasound biometry test. If the condition had been detected, the mom-to-be’s pregnancy could have been carefully monitored with frequent ultrasounds.
Stillbirth can have deep emotional effects on parents, and those wounds can start right after the baby’s death and linger.
Ortiz recalled that after he and his wife learned that their baby had died, he had to go out to his car parked outside the hospital and remove the baby seat so that his devastated spouse wouldn’t have to see it when she was discharged and sent home.
Valentina’s Voice is just the latest effort by the couple to help grieving parents of stillborns.
In 2022, they took part in the Empty Stroller March in Washington, D.C., a demonstration aimed at improving pregnancy outcomes for parents. The empty strollers that participants pushed along the protest route symbolized the lost children.
They have also pushed for passage of state legislation that would expand the Paid Family Leave Act to include granting leave from work for parents of stillborn babies.
It has been nearly two years since Ortiz and Rivera-Velez lost their baby girl. The couple does plan to try to have more children.