How do you cope when you have to plan for your baby's life -- and death -- at the same time?

Posted at 5:00 AM, Apr 24, 2017
and last updated 2017-04-25 15:19:51-04

FAIRFIELD, Ohio -- It’s been nearly two years since Chris and Danielle Jones held their infant son in their arms as he took in his final breaths. 

“On that day, we had been prepared for God to work one of the greatest miracles known to man and let our little boy live, or for him to go peacefully and go live with Jesus,” Danielle Jones said.

Before their son, Chris Louis Jones, Jr., was born July  21, 2015, the Fairfield couple had received the news that every expecting parent fears: Their unborn child had multiple congenital abnormalities – likely due to a genetic defect. His chances of life after birth were near zero.

“Doctors have been wrong on so many occasions, I thought this was just one of them,” Chris Jones said.

But 10 days after Junior was born, doctors confirmed he would never breathe on his own. 

Chris Jones holds his son Junior's foot.

“We didn’t want our child to suffer,” Danielle Jones said. “From our standpoint, it was either stay down here and be connected to a ventilator or go live with Jesus.”

A 7 p.m. that evening, the couple made the decision to turn off the ventilator that was keeping their son alive.

“He lived in my arms until 7:23,” Danielle Jones said. “It hurt me to my core. It was devastating. It was sad, but I was at peace with my baby in my arms.”

In the days and weeks following their loss, the couple began crafting a plan to ensure their son’s legacy lived on.

“Right after our son passed away, we knew we wanted his life to mean something," Danielle Jones said. "We knew that we hadn’t gone through all of this for naught.” 

In December 2016, the couple launched the Angel Baby Network – a program that works with birthing hospitals across Greater Cincinnati and Northern Kentucky to offer peer-to-peer connections for families enduring high-risk pregnancies and infant loss.

Every other month, the Joneses organize an afternoon of food, sharing and education for a group that’s grown to more than 40 families. Over the last 18 months, the group has hosted grieving counselors, physicians, social workers and even a relaxation therapist to help families discover ways to cope with their loss and help each other.

“It’s all to help these families along in the process of grieving, as they walk through this tragedy,” Danielle Jones said. “For me, it’s connecting a community of families who are going through what is these most devastating thing in their lives and bringing them together and giving them hope and a reason to remember that their child’s life means so much.”

Their desire to help doesn’t stop there.

The couple has also co-authored a book: "As Sure As Tomorrow: One Couple’s Journey Through Loss and Love." It documents the journey of losing Junior and other major challenges the couple has battled, including Chris Jones' diagnosis of multiple sclerosis.

On Tuesday, the Joneses will sign copies of the book -- published by KiCam Projects and Bookmasters -- at 7 p.m. at Joseph-Beth Booksellers in Norwood. 

“My hope is that those who read the book can see that you can through all this mess and still come out as one happy, cheerful couple,” Chris Jones said.

'The conversation shifts when they speak up'

The Joneses’ story and work are critical as local leaders work to better address and understand the region’s high  infant mortality rates, said Ryan Adcock, executive director of Cradle Cincinnati.

The Avondale-based nonprofit has been tracking and creating programs to tackle Hamilton County’sinfant death rate, which stands at 8.96 deaths for every 1,000 births. That compares to 5.82 deaths for every 1,000 births nationally.

“Obviously, anyone who comes up against this issue knows what a staggering and difficult life event it is to move beyond,” Adcock said. “The support network allows for an environment where folks can truly hear each other and see that it does get better no matter how much it hurts now.”

As members of Cradle Cincinnati’s advisory board, the Joneses are often asked to speak to lawmakers and decision makers to raise awareness and advocate for research and resources that can help curb the region’s infant death rate.

At the end of 2016, Ohio passed new legislation that helps standardize the care families receive during high-risk pregnancies and after and infant loss. It’s a law Danielle Jones was asked to weigh in on by its drafters and advocated for in Columbus.

“The breath came out of the room when Danielle spoke,” Adock said. “It was clear in that moment why we’re doing this work. It takes a lot of bravery for them to share their story and the conversation shifts when they speak up.”

'Highlight of my life'

The Joneses say their journey as parents began like most.

“For a guy, even when it’s his wife saying ‘I’m pregnant’ – it pauses you,” Chris Jones said of the fall 2015 day when his wife surprised him with the news that she was expecting. “I said ‘No you’re not.’”

Then came the routine doctors appointments, and the ultrasound where they learned they were expecting a baby boy. Immediately, the couple had their son’s name picked out and a plan for telling their family the news.

“That was the highlight of my life,” Chris Jones said. “I immediately texted everyone, and said, ‘You all can call me Senior now. That’s what happens when you have a junior, you become a senior.’”

But as the Fairfield couple celebrated, their doctor returned to the room, her face “as white as snow,’” Chris Jones said, recalling the day he learned of his son’s genetic defects. 

Christopher Jones Junior. | Provided

Throughout the rest of the pregnancy, the couple planned for their son’s life – however long it may be -- and his death.

After Junior was born, the Joneses connected with Now I Lay Me Down to Sleep, an international nonprofit that connects parents with photographers to capture their family’s moments together.

Danielle Jones continued to pump her breast milk – eventually producing and donating enough to provide 3,000 feedings to newborns at seven NICU’s in three states. And after their son’s passing, they connected with the Life Center Organ Donor Network so that Junior’s organs could be donated for research.

It was the culmination of those efforts, Danielle Jones said, that ultimately inspired the Angel Baby Network.

“We just kept asking ourselves, 'What more can we do?'” said Danielle Jones.

As the couple nears Junior's second birthday, Danielle Jones said she continues to be encouraged by the impact her son’s memory is making.

“We knew that he was going to do something awesome, and I believe there’s more to come,” she said.