Sometime between discovering our baby lacked a heartbeat at 35 weeks and delivering her hours later, we were asked by doctors if we wanted an autopsy and genetic testing completed. They would ask me and my husband, Donald, several more times before the night was over, as we lay in shock from our new reality. The only response I could formulate was: How much does it cost? No one seemed to know the answer.

Next: “Did you look over our resource booklet? There’s a lot of good information in there.” Then came the indirect, elephant-in-the-room question: “Have you given any thought to what you want to do?” the doctor asked. I looked at her in confusion, then slowly realized we had to bury our child and come up with the money to do so. The questions came at me like mosquitoes, unable to be repelled no matter how much I waved them away.

The economic burden of stillbirths — deaths after 20-weeks gestation affecting nearly 1 percent of deliveries — often goes unnoticed. One 2013 study found that the average stillbirth delivery cost is more than $750 higher than that of the average live birth. From immediately having to decide and finance how your child will be buried, to steep bills for delivery and hospital stays, families are often required to relegate grieving to the future as they deal with important financial decisions.

The time between feeling an overwhelming urge to push and our daughter’s birth was around 30 minutes. After delivery, all I wanted to do was leave the hospital as quickly as possible. I managed to leave in less than 24 hours, dealing with the financial and logistical aftermath when I wasn’t crying or sleeping. In total, the hospital charges amounted to $16,256 before insurance. Out-of-pocket costs were $1,600. For context, the average live birth delivery in the United States costs $10,808 before insurance.

The highest cost was the actual delivery, which alone took less than 20 minutes, but totaled $4,696. Another big-ticket item: $2,630 for additional blood tests, ordered for diagnostics to see what might have gone wrong. Vial after vial was collected until I had to ask for reassurance that I wouldn’t pass out.

Little is known about the financial burden of stillbirths nationwide. Other than the 2013 study by researchers at the University of Michigan, it’s not a topic that’s been studied extensively. But in my own experience, and those of many grieving mothers I spoke to, the costs associated with a stillbirth are unusually high.

For some, it may have to do with expenses associated with maternal complications, such as diabetes or hypertension, that require longer hospital stays. Extensive postpartum evaluation, whether immediately after or in subsequent pregnancies, can be costly as doctors try to prevent stillbirth from recurring. Parents also have to worry about financing the funeral and burial as well as addressing mental health needs.

My pregnancy was considered high-risk due to a pregnancy condition I have called cholestasis, which meant that the costs began to rack up before I went into delivery. One specialist appointment alone charged $689 to my account. I had to have three tests a week, which our daughter continued to pass with flying colors. Only one gave us a scare when I ended up in the emergency room because she wasn’t taking enough “practice breaths.” This visit totaled $1,328.

The only positive about the costs for labor and delivery was that they could be billed to insurance and typically financed as such. Funeral and burial costs are more immediate, and more heartbreaking. The only free option was to place our daughter in an unmarked field of angels, meaning a mass grave of stillborns close to the hospital, identified by a single plaque. Donald and I knew immediately we had to figure something else out. We quickly realized this could end up costing thousands. Funeral services, cemetery plots, and a word that makes me shiver just thinking about it — caskets — all come with hefty price tags.

Life insurance rarely covers the cost for stillborns, nor can you take out a policy for a baby at risk in the womb. In 2014, however, the Veterans Administration amended their life insurance policy to include stillborns for dependent child coverage. While the VA has taken a monumental step forward updating their policy regulations, most life insurance companies only cover children who are between 14 days and 18 years old. According to a representative from State Farm, their policies for children begin once they reach 15 days old. The wording seems to connote an attempt to save money by banking on unborns or newborns to die.

Juleigh Raines, who I met through an online support group for grieving parents, told me she lost one of her twins nine days after birth — five days shy of qualifying for most life insurance plans. To offset the cost, Juleigh, who is from Shelby, North Carolina, turned to GoFundMe, where she was able to raise $5,000. “The money collected allowed us to pay for her obituary in the paper, her burial plot, casket spray, photo canvases for ceremony, and the funeral itself. Any money left after that point was used towards medical bills from her NICU stay,” she told me.

We had some luck too. My husband’s family owned space in a mausoleum at one of the historical St. Louis cemeteries in New Orleans, so our baby was at least laid to rest in a beautiful cemetery with family. But we also owe a debt of gratitude to Jennifer Scharfenstein, the co-founder and director of Savannah Smiles, an organization that gifts families $500 toward funeral/burial expenses after a stillbirth. These funds helped us tremendously.

After the burial and funeral is complete, the costs continue to pile up. Following stillbirth, future pregnancies are often considered high risk. Specialist services, additional screenings, fetal monitoring, and earlier interventions are all strongly recommended if the mother becomes pregnant again.

For some women, just conceiving the baby they lost was a difficult process. Then they must start over with expensive fertility treatments, medicines, and procedures. Ariel Grace Lawrence of Amherst, Virginia, told me that trying to get pregnant again after her stillbirth cost well over $1,000 after insurance. Many of these treatments must be repeated every few months if they don’t take, doubling what they’ve already spent. The process of undergoing fertility treatments is stressful in itself, but can be even more debilitating having been pregnant and losing that chance at motherhood.

Losing a child, especially when they’re so close to taking their first breath, is a tragic experience that stains a parent’s heart forever. The grieving process becomes more difficult when financial stressors come into play. I know this firsthand.

We must push for proactive maternal and fetal testing for all pregnancies, progressive life insurance policies, and more conversations to better understand the economic and emotional burden stillbirth produces.

Joni Hess is a writer and social worker based in New Orleans.