‘A bridge to home, bridge to heaven and bridge to healthy’
BY LYNN OLDSHUE
There is a side of pregnancy and raising children no parent wants to know.
It’s defined by words such as “cancer,” “tumor” or “rare condition.” These words split lives into “before” and “after” the diagnosis.
“It’s excruciating to watch parents be given bad news about their baby,” said Rene Sprague, founder and director of the Bridge Program at USA Children’s & Women’s Hospital.
One of the only programs of its kind in the country, the Bridge Program provides support and helps parents create medical plans for their children.
“Most parents or caregivers aren’t medical,” Sprague said. “They don’t understand their options or what the doctors are telling them. It makes a difficult situation worse.
“It doesn’t matter if the baby is a fetus or 18 years old. You can watch parents shut down when they get bad news. Their breathing changes and their eyes cloud over. Some parents immediately become hysterical. Some get angry, even aggressive. Some show no emotion at all.
“They leave that meeting forever changed.”
That change becomes trauma that can wreck a family, no matter how strong the parents’ faith or relationship is, Sprague said.
“Parents need support to make educated decisions for their child,” she said. “We also give them peace, purpose and hope.”
After the diagnosis, parents research the medical terms, reading the worst and hoping for the best. Some are told to prepare for a funeral instead of a birth or to make a decision about DNR — “do not resuscitate” orders.
Parents can become medical caregivers on top of being mom and dad. It’s a job few are prepared for.
They miss work for doctors’ appointments, surgeries and hospital stays, sometimes quitting jobs because there isn’t enough time for both. They learn how to insert feeding tubes, give shots and read heart monitors.
They sleep on hospital couches in shifts or they don’t sleep much at all.
“Having a child who is dying or has a chronic illness that takes them close to death affects the whole family,” Sprague said.
Sprague is also a pediatric nurse. She adopted her son, Elijah, after he was in the neonatal intensive care unit (ICU). With her own difficulties coming to terms with multiple diagnoses, she understands what families go through.
“Parents feel left on their own without someone to help them figure out what is right for their child,” Sprague said. “It’s too much to handle alone. We have some kids with long-term issues, which is exhausting for caretakers. It can lead to divorce and poverty and affect a family for generations.”
The Bridge Program was given its name to represent a “bridge to home, bridge to heaven and bridge to healthy.”
Sprague guided 15-year-old Savana Graves and her mother, Evie, to the program through the last months of Savana’s life.
Savana loved people and loved to laugh. With a face covered in freckles, she often played a game of plucking the dots from her skin and placing them on her mother.
She also shared her lunch or made extra lunches for classmates who didn’t have their own.
In sixth grade, Savana made valentines for her class. On the back of the card for the girl who bullied her, Savana wrote, “I know we haven’t been the best of friends this year, and I know that you are going through a hard time. But I want you to know that you matter and I love you. I hope we can be better friends in the future.”
Two years later, Savana turned 13. Scenes started playing in her mind like a movie on top of what she was doing at school.
Evie thought her daughter was just daydreaming. Then came a call from the school saying Savana had urinated on herself. Evie knew something was wrong.
“That was March 2018. I was a single mom with Savana and Seth, my 16-year-old son,” Evie said. “Savana had gained weight, but I thought it was just a part of becoming a teenage girl. I took her to the hospital and they gave her an MRI.
“We ended up at the emergency room at USA Children’s & Women’s Hospital,” Evie said. “It was the beginning of a very long journey.”
As Savana started having seizures, a growing team of doctors tried to figure out the cause.
“The more tests they ran, the more problems they found and the more people became involved in her case,” Evie said. “The only common denominator was me, the caretaker. Doctors from different areas of the body came to me for answers about medicines and tests. I had to keep track of it all.”
Savana had brain surgery in July 2018, which was expected to show a tumor was a benign cyst. She spent the next two months in intensive care with bleeding in her digestive tract, twice receiving a pint of blood to keep her alive.
On August 30 the oncologist met with the family. The doctor had written “high-grade glioma” on a yellow notepad and underlined it twice. That’s a malignant tumor of the nervous system.
“This wasn’t what we expected to hear,” Evie said. “The ICU doctor said the tumor was aggressive, incurable and terminal.”
After several minutes of shock and not understanding the doctor’s explanation for treatment, Evie dried her tears and left to change Savana’s diaper. Hearing her daughter would die was more than she could take.
Savana and Evie spent 14 of the next 24 months in hospitals in Mobile and Atlanta. Evie quit her job and became Savana’s sole caretaker. She had married Larry Croomes in the hospital room before Savana’s first brain surgery and was thankful her new husband was paying the bills.
There was radiation to shrink the tumor, but the steroids reducing Savana’s seizures began destroying her bones, making walking difficult. A biopsy on her thalamus found a second type of brain cancer that controlled the functions of her body.
In the fall of 2019, Savana declined in ways the doctors didn’t understand. They called it “disease progression” as the seizures became unmanageable.
“In comes Rene and the Bridge Program program, and they were the best thing that could have happened to us,” Evie said. “Rene took over the role of being the connection between Savana and the teams of doctors. I realized it had been so much work trying to be Savana’s nurse that I wasn’t given the opportunity to be her mother.”
Some nights, Sprague sat with Savana, giving Evie a chance to go home and have a home-cooked meal. Sprague also started the difficult conversations about end-of-life choices and doing what was best for Savana, including finding a hospice agency to help Savana go home from the hospital for her final days. Any time they had a problem, Sprague was there.
“Savana spent her 15th birthday in the hospital, and Rene and everyone in ICU threw the biggest birthday party for my little girl,” Evie said. “We knew we were getting close to losing her and went home two days later. That was where Savana wanted to be.”
Sprague told Evie she would know when it was Savana’s time to go.
“Two weeks after we got home, I knew it was time,” Evie said. “I called Rene and she came over and made my baby as comfortable as possible. She told me when Savana was gone.
“Rene assured me I had made the right choices and had done everything right. She loved us enough to be there when Savana closed her eyes for the last time.”
Choosing between life and death is a loaded situation for parents, Evie said.
“At the moment, you want to tell the doctors to do everything they can to keep your child alive because that’s what your heart wants,” she said. “But you know your child is not going to get better. So what is the best thing for them? When Savana was lucid, she kept telling us she was ready to go home. Rene helped me give Savana her last wish.”
Savana died Jan. 27, 2020, two weeks after her 15th birthday. Since Savana’s birth and death were so close together, Evie chose to celebrate her birth. She went to Waffle House for chocolate chip waffles, Savana’s favorite.
Evie still has a painting Savana made long before she got sick. On it, she wrote, “I love everybody.”
“Her tombstone says, ‘I love everyone,’ because she did,” Evie said.
Evie will soon begin teaching a GriefShare class at her church to help comfort and guide others through the journey of losing a loved one. She calls it “my purpose in my grief.”
That purpose in grief also drives Sprague.
“The Bridge Program program was born out of my grief of having to watch my son struggle,” she said. “There were ways I felt like I failed him because there were things I didn’t know. The Bridge Program gave me a purpose for all of that.”
Sprague knows how to read the personalities and moods of parents and meets them where they are. She helps them set short-term goals they can accomplish, building a relationship before taking on the harder decisions. She calls it working through the “anticipatory grief.”
“You can’t keep hammering the hard stuff over and over because they don’t come back or they get really angry and they shut down,” she said.
Direct and honest with parents, Sprague provides evidence-based answers but never takes away hope.
“It’s their job to pray for a miracle. I’m praying for the same thing,” she said. “But we have to make a medical management plan when there’s less emotions involved to help us get through this the best way possible.”
The Bridge Program has helped more than 500 families since the beginning of 2018. Every patient is seen by Sprague. She is helped by one nurse but said she needs eight more. The program is adding a supportive care unit with six rooms that are double the size of regular hospital rooms. Those will be for families who are on extended hospital stays.
“The unit will be for kids like my son, Elijah, who are frequent flyers at the hospital,” Sprague said. “Their families can be more comfortable in these rooms.”
Parents who lose a child often volunteer or give back to the program. One gives out fluffy blankets with her son’s name on them.
Lindsey and Reynolds Brabner have raised almost $50,000 for the Bridge Program in memory of their daughter, Hartley, one of the first Bridge babies.
Hartley had Trisomy 18, a genetic disorder considered incompatible with life.
“As soon as we received the diagnosis at the 22nd week of my pregnancy, Rene was with us and laid out our options,” Lindsey said. “I needed to have a plan because when you are thrown into this, you can’t make logical decisions.”
Sprague helped create Hartley’s birthing plan, which included the funeral home and the cemetery. The Brabners chose what is referred to as “comfort care” because they were told if Hartley survived, it wouldn’t be for long. They didn’t want her dependent on a tube to breathe or constantly stay in the hospital to be kept alive.
Reynolds said they met with their priest to plan for a Mass and baptism.
“Rene pushed us to do this at our own pace,” he said. “Having that plan gave us some control of the life we had with Hartley and to enjoy it more. It saved us from stumbling around blind.”
Hartley was born Dec. 30, 2017, with 25 uncles, aunts, cousins, grandparents and friends waiting at the hospital for her arrival.
“We wanted everyone there because it could be the only time anyone could visit her,” Lindsey said. “If she was born alive, there was a chance she would only live a few hours.”
Sprague was at the delivery, despite walking in pain from the ACL she tore playing flag football in her yard the week before.
“Hartley wasn’t breathing when she was born, but Rene gave her two quick puffs from the resuscitation bag,” Lindsey said. “We all cried when Hartley took her first breath and started breathing on her own.”
There were months Hartley went everywhere with the family. She went to Mardi Gras, the Alabama Deep Sea Fishing Rodeo, the zoo and her big sister’s basketball games.
Hartley sucked on noses and blew raspberries. That was how she gave kisses. She loved to cuddle. She also learned how to rip out her feeding tube.
Doctors inserted a gastronomy tube to make feeding Hartley easier. The surgery was successful, but her oxygen started falling. The doctors gave the Brabners a decision: Put Hartley on a ventilator or make her comfortable and love on her because she wouldn’t make it through the night. Hartley went into cardiac arrest during intubation.
“Rene asked us if we wanted to resuscitate or to just hold her and let her go,” Lindsey said. “We had chosen not to resuscitate and said, ‘Let her go.’ It was the worst thing I have had to say.”
Hartley died Feb. 5, 2019. Lindsey and Reynolds wrote in her obituary, “We were just parents trying to do what was best for our baby girl. She made us strive to be better parents, to be a better family, to be better Christians and to just be better people.”
Lindsey wears a necklace with the number 402 on it. That’s how many days Hartley was alive.
Reynolds wears a blue bracelet that reads, “Trisomy 18 Awareness. Perfectly Imperfect.” “HLB#402” is on the back.
“Hartley was alive only 402 days,” Reynolds said. “She couldn’t sit up or talk, but she still touched the lives of many people.”
Touching lives was the message of Sprague’s eulogy at Hartley’s funeral. In the moments of intense grief, you have to find a purpose for the pain and loss, she said; Hartley’s purpose was teaching perspective, unconditional love, selflessness and hope.
Ending the eulogy with a quote she had found weeks before, Sprague said she realized she was saving it for Hartley.
“But with every bit of fight within me, I choose to say that death does not have the final say,” Sprague read. “That as long as I live, I will carry her in my heart. And as long as my feet stand upon this dry earth, the world will still quake from the impact of her days, because that’s what happens when love lives on in spite of death. Nothing is wasted.
“Life arises from the ashes,” she ended. “Redemption comes like a flood.”
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