“She was the easiest baby, my only baby”

By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Sirena Nieves remembers her daughter’s smile, her laugh and her fight.

She remembers the joy she brought to those around her, in spite of the pain she knew in her short life.

And she remembers the exact moment her little girl passed away: 9:48 a.m. Tuesday, April 28, 2020.

Elliana Marie Rose Wright was just 15 months old when she died at Riley Hospital for Children after suffering complications related to multiple congenital heart defects.

She’s been gone now longer than she was on this Earth, but her sweet memory is very much alive in the halls of the cardiovascular intensive care unit at Riley, where she lived for so many months, celebrating Thanksgiving, Christmas, her birthday and all the special days in between.

“She was always smiling, always happy,” Nieves said. “She was the easiest baby, my only baby.”

The morning Elliana died, Nieves remembers how she had gone outside to get some fresh air. In that early morning darkness, she called out to God to take care of her child, who was running out of fight after multiple setbacks.

“Elli brought me really close to God, and I asked him to heal her completely, and if that meant she has to go upstairs (to heaven), she has to go upstairs,” Nieves said.

A few hours later, Elliana drew her last breath despite lifesaving measures taken by the team in her room. Slowly, quietly, they disconnected her from the monitors and gently placed her in her mother’s arms.

“I held her all day,” Nieves recalled. I don’t think I left Riley until about 5 or 6 o’clock. I had all of the Riley nurses who loved her there. They were absolutely amazing. They just loved her so much.”

HONORING A CHILD’S MEMORY

Family nurse practitioner Erica Vinson cared for Elliana during the eight months she spent at Riley before she died. Vinson, who worked on a medical-surgical unit before coming to the CVICU, didn’t have a lot of experience with patients passing away.

The little girl’s death hit her and many of her colleagues hard. The unit sent flowers, and Vinson and some of the team went up to northern Indiana for the funeral. But Vinson wanted to do more – not just for Elliana and her family, but for all of the patients who don’t get to go home.

“We always would send a card a couple weeks afterward that we all would sign, and I think that was very heartfelt, but I wanted to do more,” she said.

And in order to do more, someone had to be willing to take on that responsibility. That someone was her in those early days. But she’s been joined by a team of dedicated nurses and staff who want families to know how much their child has meant to their Riley team.

With input from Dr. Larry Markham, division chief of pediatric cardiology at Riley, other team members, the Riley Children’s Foundation and Mended Little Hearts, a bereavement committee was formed in the Heart Center last year. But it took until this year for the council to get its legs under it.

Carrie Davison, clinical manager for CVICU, is proud of the heart that her team shows, especially during difficult times.

“These are things that make nursing feel healthier when we know we are taking care of each other and we know we have a process in place to help grieving families,” Davison said.

TREASURED KEEPSAKES

Seeing Vinson and other members of Elliana’s care team, both from CVICU and the step-down unit, at her funeral last year meant a lot to Nieves. A card they brought with them contained notes from many nurses sharing how much her daughter had impacted them, she said.

Later, she received a “heartbeat plaque” with Elliana’s name and heartbeat image engraved on it.

“To go from watching monitors all the time and seeing the heartbeat in the hospital, then to lose your child but see their heartbeat in that way is very special,” she said. “That plaque means so much.”

She keeps it in a curio cabinet at home, along with her baby’s favorite stuffed animals, rattles, superhero cape and other treasures from Elliana’s life.

For Nieves, maintaining that connection with her daughter’s Riley team has given her strength to keep moving forward.

“I miss Riley so much; it was our home for so long,” she said, recalling how one doctor referred to Elliana as the “boss baby” of the unit.

“She would be in her exersaucer in her room, and she had to have attention from everybody in the hallway. If the nurses had a hard day, they would come to Elli’s room, and she would help them get through.”

“THEY HAD AN IMPACT ON US”

That bond is something the bereavement committee wants to honor, not just for one patient but for any Riley heart patient who dies.

“We want to let families know that however long or short their child’s time was on the unit, they had an impact on us and are not forgotten,” said Vinson, who funded the initial plaques herself before a donor provided funding through the Riley Children’s Foundation.

The committee also sold T-shirts and snacks in the breakroom to pay for postage and other expenses. They recently published a brochure that allows parents to opt in or out of the bereavement services, which include cards sent on anniversaries and other special days, in addition to the heartbeat plaques.

“People who do not respond are considered to opt out,” Vinson said. “We want it to be therapeutic, not triggering. If it’s triggering, we want them to be able to throw the brochure in the trash and not deal with it.”

Nieves received her brochure recently and keeps it in her curio cabinet with Elliana’s other mementoes.

“I thank Erica so much,” said Nieves, who appreciates that her baby girl is not forgotten. “So often with Riley stories, the baby gets better and goes home, and this story is a lot different.”

What’s not different is the love that was part of her young life.

And honoring that life is important to Vinson and her team.

“I always felt when it comes to end of life, I’m not very good in the moment in those situations,” the nurse practitioner said. “I feel like I don’t say the right things or provide enough support,” she added.

“But I feel it so deeply in my soul. When I leave, I cry, and it hurts that these families are dealing with this and I pray for them every single day. I feel it so strongly, but I don’t feel like I know how to express it or show it, and this is my way of doing that.”

RILEY WAGON FOR ELLI

Nieves sold bracelets in memory of her daughter and raised more than $2,500, enough to fund a Riley wagon through RCF in June. Now, when they see the #ElliStrong wagon around the hospital, nurses take a picture and send it to Nieves.

One day, the grieving mom was lost in a memory of her little girl, and just then her phone dinged. It was a message from a nurse sending her a photo of Elli’s wagon.

“Elli always lets me know that she’s here.”

This will be the second holiday season without her daughter, but Nieves still counts her blessings.

“I am grateful that I got one of each holiday with her. And the support I’ve gotten from Riley has been absolutely amazing.”