In grief, Jasper couple creates fund for parents facing their worst nightmare

On November 25, 2015, Ashley and Nick Spanenberg let their 12-day-old daughter Athena go.

Athena suffered from Hydrops Fetalis, a condition that causes fluid to accumulate in an infant’s body. In Athena’s case, the fluid was settling in her lungs and had caused one to collapse. 

The doctors at Riley’s informed the couple there was nothing more they could do. Unable to process carbon dioxide, she was dying but being kept alive with a respirator.

Ashley and Nick took the final moments of their daughter’s life to read to her, hold her and rock her. Then, after taking their time with Athena, Ashley removed the respirator and the infant was gone moments later.

A horrible moment for any parent.

“I couldn’t believe I was in that situation,” Ashley said. “You can’t even process that this is your child you are looking at and this is your reality. I have had four other kids and they are all healthy.”

Athena’s condition had deteriorated when an infection developed after she was born. Ashley, however, had no idea about Athena’s battle as she had been medivaced from Jasper to Methodist Hospital in Indianapolis for complications at the end of her pregnancy. As doctors worked to stabilize Ashley, Athena was taken to Riley Hospital for Children for treatment. It wasn’t until Ashley stabilized that she found out about Athena’s deteriorating condition.

The Jasper couple had set aside $3,000 for Athena’s birth but now faced the added expense of getting their baby home and burying her. But the single-income family — Nick works while Ashley stays home and homeschools the couple’s four daughters, Toula, 2, Lola, 4, Meadow, 5 and Faith, 6 — was never prepared for all the added expenses from Athena’s death.

Excluding the transportation and miscellaneous costs like a newspaper obituary (the Dubois County Free Press does not charge for obituaries) and flowers for the funeral, the average funeral cost is about $9,000. Furthermore, most insurance companies will not underwrite insurance for an infant with known severe health complications.

It would cost about $2.50 per mile to transport Athena home in addition to the cost to remove her from the mortuary at the hospital. For Athena, those costs alone amounted to $3,500 but luckily, a group stepped forward to connect the couple with a church in Bloomington to assist with the costs involved to provide a burial near the church saving the couple some of the expense they were never prepared to pay. Nick and Ashley even dug Athena’s grave to save on the expense.

Afterwards the experience with Athena nagged at Ashley and she began to research the prevalence of this scenario being faced by Indiana families.

“Indiana has the highest [infant] mortality rate in the country; one baby every thirteen hours,” Ashley said. “I found that out through the Indiana Department of Health.”

The Indiana State Department of Health reported 7.15 deaths per 1,000 live births in 2013, the most recent statistics listed on the state site. According to the state, the southwestern portion of the state which includes Dubois, Warrick, Vanderburgh, Daviess, Gibson, Perry, Pike, Posey, Spencer and Martin counties has 8.9 deaths per 1,000 live births.

“So, Riley’s is probably seeing some of that,” she added.

As Riley Hospital for Children is sought out for their specialization in combating children’s diseases, with those victories come defeats. Parents from all over the state bring their children to Riley’s. If a family’s child passed away in the care of the hospital, the financial burden of transporting that child back home could be a heavy slap.

“I thought, ‘Why should parents who are under the trauma of losing a child be expected to carry and think about the heavy financial burdens of laying a child to rest?’” Ashley said. “It’s like the most horrible thing you can ever imagine happening.”

Knowing Athena was coming, Nick had added her to the couple’s life insurance plan during the open enrollment period that occurred prior to her birth. With the money they received from the policy, Ashley has assisted three other people facing similar issues or financial burdens related to health issues.

This motivated Ashley to create a fund to assist other families facing similar issues. Called the Memory Eternal Fund, the fund is facilitated  through the Riley Children’s Foundation.

The money is an important part of the fund, but Ashley sees herself as someone to provide some emotional support for grieving parents. “There is shame in this. I felt I was to blame. Like I had done something wrong or I didn’t make her correctly,” she said. “The day before she died, before we knew she was going to die, I was sitting outside bawling my eyes out and this lady, I didn’t know who she was, just told me it was okay. She said her son was dying of cancer and she understood how I felt.”

As it takes a village to raise a child, it can take one to bury a child also. Ashley’s work to help other families sprouted new volunteers willing to help others facing similar horrible losses

For Ashley, the money is just one part of her efforts to help those in pain. She plans to launch a website with resources to help families dealing with a loss. She has also volunteered to come speak to groups to help get the word out to those needing some type of connection.

The Memory Eternal allows Ashley to give back and keep the memory of her daughter alive as well as honor the doctors and medical staff who assisted them through the painful process. For those who have lost a child, the fund can also be a way to help others facing a similar situation in the memory of their child.

“The Memory Eternal fund is also a great way for those who have lost a child or loved one to keep the flame of their life alive and realize the beauty that can come out of that death by helping others,” Ashley wrote on the fund page.

Ashley needs help to raise money for the fund administrated through Riley Children’s Foundation. Those wishing to donate can do so through the page here. More details are available at the new organization’s Facebook Page here.

The website lists a donation goal of $10,000.00, but Ashley says that will only cover expenses for one family’s need. The fund needs to grow to support more.

Jim O’Neal, News Director at WITZ AM/FM contributed to this story.