FORT WAYNE, Ind. — Andrea Daniels held her baby son as he drew his last breaths. She rocked him and sang, God has smiled on me ... He has set me free ... God has smiled on me ... He's been good to me.
For five months, she wasn't able to pick him up, to hug him, to snuggle him whenever she wanted. Jourdan Harris had spent most of his life unconscious, in a hospital crib, tubes sticking out of his body, fighting to survive.
"My biggest prayer was that he knew that I loved him," Andrea said, tears running down her face during a recent interview at the Fort Wayne day care where she works. All around her, kids slept on blankets on the floor. An infant rocked in a swing in the corner of the room.
"It was very important to me to let Jourdan know that no matter what, I love my baby. In a normal situation, how do you let your infant child know you love them? To pick them up, to take the pain away, to give them a bottle, to change them when they're wet. And that was taken away from me.
"I struggled daily to try to find ways to let Jourdan know I loved him. That's why I made sure the last voice he heard, the last touch he felt, was me."
Jourdan Harris was one of 613 Indiana babies who died before their first birthdays in 2015. Indiana has the eighth-highest rate of infant deaths in the nation. Many are preventable.
In 2013, then-Gov. Mike Pence, now the nation's vice president, made saving infant lives a top health priority of his administration. "This is not about reducing numbers," he said at the first statewide infant mortality summit that year. "It's about reducing heartbreak in Indiana."
Andrea Daniels knew she was in for a complicated birth. Prenatal screenings had shown that her baby had problems with his heart, lungs and bone structure.
"It was a difficult pregnancy. I just wasn't feeling good," said Andrea, 34, who also has a 14-year-old son, Jaylen Harris. "It was totally different from my first pregnancy, totally different from that. Something just didn't feel the same, it just didn't feel right."
In the early morning of July 13, 2015, not due for another six weeks, she woke up with a serious stomachache. A few hours later, she was again awakened by the pain. This time, she was bleeding. Her son's father rushed her to the hospital.
An hour later, Jourdan was born, not breathing. Doctors put him on a ventilator before transferring him to a specialty children's hospital 130 miles away.
He had a hole in his heart, a blood vessel wrapped around his trachea. His mother didn't see him for three days after his birth. His first few months of life were filled with surgeries.
"Sometimes I felt like he just suffered laying in that bed day in and day out," Andrea said. "I felt like I didn't deserve to be healthy. When they said they were going to hold off on his feedings now because they were noticing his stomach was starting to enlarge, like, I didn't want to eat."
There's a problem involving Indiana's infants. Around 600 of them don't make it to their first birthday. The state has a high infant mortality…
On Christmas Eve, Jourdan had to be resuscitated three times.
"The doctors sat me down on Christmas and said basically there was nothing else they could do for Jourdan," Andrea said, her speech slowing, stopping to take a deep breath to compose herself. The children at her day care moaned in their sleep, unaware. "And they wanted to know what I wanted done.
"I was presented with those options, before, early in Jourdan's life, like a month after he was born. They told me they didn't think he was going to make it. At that time, as a mother, how do I give up on my child? How do I not fight for him?
"Dec. 27 is when I was just back full circle. I went back to day one. I don't know if God just felt I was strong enough to be able to make that decision, but I can tell you, sitting here today, I live with guilt every day. I know Jourdan's probably in a better place. He's not suffering anymore. But no mother should have to make that decision."
You have free articles remaining.
Now Andrea is surrounded by children all day at her job at the Fort Wayne day care center. It's not easy.
"Oftentimes the crying is hard because I never heard Jourdan cry," she said.
"And it's kind of hard for me, because sometimes I find myself almost envious or jealous a little bit of parents who have their children or whatever. But I love the kids, because I love when they just come up and give me a hug. I love the teaching aspect of it. We do a lot of learning when we play. They be like, 'Are you guys talking about circles? Because we like circles.' So that makes me happy.
"And then I feel guilty. Especially at work, here it is I'm taking care of children and my son is gone. So I feel guilty."
"This one is hard," she said, pointing to a plump baby the same age as Jourdan when he died. The child smiled up at her.
"Especially when he's in that cradle position and I'm giving him that bottle. That first time was really hard for me because, it's just, I don't know, I felt, I felt robbed of being Jourdan's mom. I can remember I used to have to ask, 'Can I hold him today?' and the nurses were like, 'Well, he had a bad night. We're not going to get him out of bed today.'"
A little more than a year after her son's death, Andrea isn't sure she went about grieving the right way. She kept busy, didn't seek out support groups or counseling. Now she wishes she had given herself more time to mourn her loss.
So many things remind her of Jourdan. She found out she was losing him on Christmas Day. She doesn't put up a tree on the holiday, anymore.
The guilt she feels over every decision she's made about Jourdan can be overwhelming.
After his death, she returned to Fort Wayne and began planning his funeral: "I was in the middle of the store and I'm just like, 'How do you pick an outfit to put your baby in the casket? How do I do that?' "
Several weeks ago, she moved to a new apartment. The last things she packed were Jourdan's clothes and blankets from the hospital. "How do you put your son's whole 5.5 months of life in a box?" she said.
She hasn't gotten Jourdan a headstone yet. It's too painful. "When I pull into the parking lot of the cemetery, I can't do it," she said, crying uncontrollably. "And I feel guilty because Jourdan is just out there, like he don't belong to anybody and that's not true."
Sometimes she just feels like giving up.
"It's just hard to pick up and move on with life in my son's name," she said. "But I have to, because I still have Jaylen.
"Whoever says it gets easier with time is not telling the truth," she said.
"As it gets longer, it's more hurtful. Like my oldest son had a basketball game and the kids I can just hear them laughing and playing with their friends and I was just like, Jourdan will never get to experience this. Or when I go to the grocery store I think of what his favorite foods would have been. What would I put in the basket because I know Jourdan likes it?"
This series was produced as a project for the University of Southern California Center for Health Journalism's National Fellowship.