For the Togola-Sacko family of Charlotte, 2018 will be remembered as the year their lives broke into pieces, then changed dramatically again by Christmas.
Their third baby, Aicha, was critically ill when she was born in March. She had a structural deformity seen in fewer than 1 in 10,000 girls that caused her urine to drain back into her body, essentially poisoning her organs.
And a month after her birth, while she was still in pediatric intensive care, a fire destroyed nearly all of the family’s belongings in their East Charlotte apartment.
But along the way, they received critical aid from doctors, nurses, and later, the Salvation Army’s Christmas program.
“God heard our prayers,” said Mariam Togola, Aicha’s mom.
‘A big risk’
Doctors had told Mariam Togola that her baby would be born with health problems. But nothing could have prepared her for what happened after she awoke from her C-section on March 16.
Medical staff at Novant Health Presbyterian Medical Center brought her a photo of her baby girl and terrible news: 6-pound Aicha was hooked up to life support and might not survive the next 24 hours because her heart and other organs were not working.
Togola was so distraught, she needed sedation. Her husband, Fousseini Sacko, couldn’t stop crying, she recalls.
Nearing the end of the 24-hour period, Togola says, she was wheeled down to the neonatal intensive care unit to see her baby for what she feared would be the last time. She was met by medical staff who told her that she’d have to wait to see her — but for a hopeful reason.
Aicha’s heart had started beating by itself, and her other organs were starting to show signs of improvement.
The next day, three surgeons performed emergency surgery to create a vesicostomy, a surgical opening in the bladder to the outside of the body to allow urine to drain. They also created an opening in her abdomen that allowed vaginal fluids to drain.
Dr. Winifred Owumi, a pediatric urologist who operated on Aicha on her second day of life, said Aicha wouldn’t have survived without the risky surgery.
“When you put a newborn baby under general anesthesia - that’s a big risk,” Owumi said. “Just recovering from that surgery is a big deal. She was very critically ill for a few days. ... We were definitely worried.”
A month after Aicha was born, her dad was burning incense in the family’s apartment when their apartment caught on fire.
Togola was in the hospital with the baby. Sacko managed to escape safely, along with their two younger children, 5-year-old Satimata, and 2-year-old Laila. But nearly all of their belongings were destroyed.
Nurses in the neonatal intensive care sprang into action. They collected clothes and toys for Togola, Sacko and their children.
Meanwhile, the family has settled into a new home in a quiet apartment complex in East Charlotte.
As the weeks wore on, Aicha got bigger, stronger and more alert.
One of her nurses, Michael DeBetta, formed a special bond with her. One day, after noticing that Aicha didn’t have any clothes below her crib like all of the other babies in the NICU, he went to Marshall’s and bought several outfits for her to wear in the hospital.
He became sensitive to her special sounds, and even on the days when he wasn’t assigned to care for Aicha, he’d find himself going to her crib and checking on her.
“She had an uncontrollable cry. You’d stop in your tracks if she cried,” he said. “I took that on as my identifier.” Aicha’s parents, who were busy with their older children and working to pay the bills, couldn’t be at the NICU all the time like some parents. So DeBetta made a point of calling them with frequent updates. (Sacko is a delivery driver for Amazon; Togola works at a daycare center and is also a hairdresser.)
It was June before Aicha left the hospital.
Togola and Sacko were relieved when Aicha finally came home, but caring for her remains a round-the-clock job.
Because she has two openings in her abdomen to drain urine and vaginal fluids, she must wear two diapers at a time that must be changed every hour to avoid infection — one between her legs, like other babies, and another wrapped sideways around her mid-section.
She has frequent doctor visits and therapy appointments, and another was reconstructive surgery is coming up soon. Owumi expects more surgeries are ahead of them.
The good news, Owumi said, is that Aicha should be able to lead a normal life and bear children.
Despite the hardships of the past year, the family keeps a dizzying pace.
Togola is once again working on her bachelor’s degree, juggling studying while caring for her kids and working at a daycare center.
Togola recently completed two classes at UNC Charlotte toward her bachelor’s degree in political science, with a minor in data science. She started working toward her diploma in 2011 and has been chipping away at her courses when her family and work commitments allow.
“Everybody asks me, ‘How do you do it?’ ” Mariam Togola says. “But life is a choice. When it’s harder, you have to push harder to get to the other side.”
Her goal is to return to the west Africa country of Mali, where she and Sacko are from, to do community outreach for women and girls.
Togola says she’s the first in her tribe to earn an education. Most girls are pressured to get married at 14 and start families soon after.
She bucked tradition by fleeing to Senegal to avoid marrying young. She earned an education and started work as a marketing assistant in west Africa. She was 28 years old before she married.
Some in her family disowned her, but her six brothers and sisters “are so proud of me,” she says.
“I want to work for the community, to give them some hope and say that ‘Yes, when it’s hard, it’s hard. But you never have to give up. You just have to have somebody who can encourage you and give you hope.’ ”
‘People have done a lot’
The Togola-Sacko family is Muslim, but they enjoy celebrating the secular traditions of Christmas, as Togola did as a child in Mali.
With Christmas coming and the family’s finances tight — keeping up with Aicha’s appointments means Togola can’t work more than 15 hours most weeks, and a hospital stay is looming — Togola and Sacko turned to the Salvation Army’s Christmas program for help with gifts for their children.
Satimata, 5, wants a hula hoop to replace one that was destroyed in the fire. Leila wants a tricycle and art supplies. Aicha’s big needs are diapers — size 4 to fit sideways around her midsection — and slip-on clothes that don’t have a waistband putting pressure on her abdomen.
This year, Satimata, Leila and Aicha are three of approximately 7,300 children who will receive gifts this Christmas thanks to the Salvation Army’s Christmas program, which matches children in need with anonymous donors who buy the gifts.
Some 1,400 seniors will also receive gifts as part of the program. In cases where donors don’t come forward, Charlotte Observer readers cover the expense by giving to the Empty Stocking Fund.
Money raised by last year’s fund allowed the Salvation Army to purchase 6,056 toys and 456 gifts for low-income seniors.
Each child will also receive a new backpack this year, so Empty Stocking funds were used to purchase 8,000 backpacks and 20,000 small items to stuff inside them.
Children in the program range in age from infants to 12 years old.
On Christmas Eve, presents for the family’s three little girls will appear under a tree nestled by the family’s front door, thanks to kind-hearted donors and the Salvation Army.
Togola says she’s overwhelmed by the help the family has received this year, both from nurses at Novant and the Salvation Army donors who stepped up to buy her children’s Christmas presents.
She’s excited to see the look on her children’s faces when they unwrap their gifts under the tree on Christmas morning.
“It’s a huge help,” Togola says. “People have done a lot for us.”