When Naiima Oden was born prematurely, her mother Markita Batties expected things to go just as they had for her first child, Amirah, who was also premature and spent the first few weeks in Akron Children’s neonatal intensive care unit.
However, Naiima’s situation was much different. She spent the first 2½ months of her life at Akron Children’s and faced numerous challenges, including cerebral palsy, hearing loss and failure to thrive.
Markita was overwhelmed with caring for such a sick, fragile baby, along with her elderly mother and autistic brother.
She likened her experience during that first year and a half to being in a war zone.
“I stepped on a lot of land mines alone,” she said.
At the suggestion of one of Naiima’s therapists, who recognized that Markita needed help, she connected with the palliative care team in The Haslinger Family Pediatric Palliative Care Center.
Naiima is now 7 years old. Although she has multiple special needs and requires a tracheotomy and feeding tube, her mom has learned to celebrate the small victories they’ve achieved along the way, such as when Naiima gains a pound or 2 or how she’s learned to communicate with a special device.
“It’s hard to juggle being an advocate for your child, mother and caretaker,” Markita said. “Palliative care has taken on the role of advocate, so I can focus on being a mom and caretaker. They empower us as parents.”
Because Naiima sees several specialists, the palliative care staff helps coordinate the various appointments and services she receives, so the entire care team is on the same page.
Markita is in awe that the palliative care team can accomplish so much, knowing that many other families just like hers have such complex needs.
“They are my lighthouse. Sometimes things are good and I don’t need them as much, but I know they’re always there, shining in the distance,” she said.
The palliative care team has also helped Amirah, age 11, cope with her little sister’s chronic illness, whether it’s allowing her to stay at the hospital with her mom and sister, or giving her a teddy bear that has a tracheotomy to help her understand her sister’s medical equipment.
As a result, she’s adjusted very well to living with Naiima’s chronic illnesses.
“Amirah is very protective of her sister and has learned a lot about medical procedures,” said Markita. “She wants to be a doctor when she grows up.”
Naiima has therapy sessions at Akron Children’s 3 times a week, with speech therapy being her favorite. She also has regular weight checks.
Although she weighs just 40 lbs., her dietitian Erin Teague has worked diligently to get her on the right formula that’s enabled her to gain weight.
Currently, social worker Denise Zehner is trying to enroll Naiima in school, which has been challenging because of her special needs and use of a wheelchair.
“Dr. Friebert has assembled an amazing team,” Markita said. “Although we know how busy they are, they make you feel like your family is the priority. I can’t say ‘thank you’ enough.”