Eight-month-old Bella gazes up at her mother’s face with complete adoration and focus, almost as if she’s memorizing the curve of every eyelash.
No doubt, these two have had some time to bond. Bella has spent her entire short life inside a hospital—the last six months at Johns Hopkins All Children’s Hospital. While doctors tend to resist using terms like “miracle baby,” it’s tempting to think that way about Bella.
Born prematurely at just 24 weeks at Florida Hospital Tampa, where Johns Hopkins All Children’s provides neonatology care, Bella developed a devastating infection of the small intestine called necrotizing enterocolitis (NEC). Despite their efforts, Bella was not improving.
In January, at 2 months old, the neonatologists ordered Bella to be transferred to Johns Hopkins All Children's where the most complex cases are handled. She was so very sick. So tiny. She had lost almost her entire bowel—she had only 10 centimeters left of her small intestine. Her body was unable to take in the nutrition she desperately needed. Her liver was compromised. She weighed about 1 pound.
“She was gravely ill,” says neonatologist Fauzia Shakeel, M.D.
“If this were to happen in a full-term baby, one with enough intestines to begin with, we can often rehabilitate effectively. But when we see this in a very low birth weight, premature infant, who has such extreme complications, we know the care is going to be highly complex.”
It was that first day here, after surgery and a guarded prognosis from doctors, that Bella’s family realized what they were up against.
Could Bella survive this? And if she did, would she need a liver or intestinal transplant?
“I thought, ‘Am I ever going to bring my baby home?’” says Wanda, Bella’s mom. “I was just bawling.”
What the family could not have known that first day, but would quickly learn, is that Bella could not have been in better hands. She was a perfect candidate for the hospital’s intestinal rehabilitation program called Care Under Intestinal Rehab Excellence (CUIRE). This comprehensive program provides a range of services to treat short bowel syndrome, severe gastrointestinal dysfunction and intestinal failure.
Patients receive care from a coordinated team of neonatologists, gastroenterologists, surgeons, nurses, dietitians, pharmacists and speech therapists, all communicating and coordinating care to achieve the best outcome. The program is expanding to include long-term follow-up care by the same clinical staff who see them in the hospital.
“Excellent and professional” is how Wanda describes Bella’s care. She likes how the team encourages her family to play an active role.
“They truly listen. As her parents, Marcus and I are able to speak up, say what we think, and they take that to heart.”
Still, Bella is on a slow road. Weeks go by before Wanda can hold her. Mary Youngblood, R.N., becomes her primary nurse and helps Wanda finally get baby Bella into her arms.
“As a mom, I couldn’t imagine not being able to hold my baby, so we started working on that,” Youngblood says. “You make a decision, ‘OK, today we’re going to hold.’ It’s at least 30 minutes before the actual holding occurs … by the time you’ve re-routed wires, assembled a respiratory therapist to protect oxygen, ventilator and whatever else is going on. It’s a team effort.”
“It was the greatest joy to hold her,” Wanda says.
Turning the Corner
Once the doctors are able to perform the anastomosis (re-connect her intestines), the care team begins to see marked improvement. They slowly begin feeding Bella breast milk through a tube into her stomach. Her liver improves. She gains weight.
Meticulously balancing the IV nutrition with the feedings is both science and art. It makes a difference for Bella. But it’s a procedure to help her baby with gastric reflux that has Wanda truly excited. The reason? Now Bella is smiling like she never has before. This little girl is truly healing.
“I think when you have cases like Bella’s, which are so challenging, and you’re uncertain of the outcome, you simply do your very best for them, and you never, never lose hope,” Shakeel says.
Bella still has challenges, but after six months at Johns Hopkins All Children’s—she’s going home. Home with no ventilator. With a normal liver. Home to big sister Mia. Home to her own room with a white crib and decorative elephants waiting to greet her. Home to a family who has championed her needs every single day of her eight months on this earth.
“I think about all Bella has been through,” Wanda says. “She never gave up. So why would I?”
Bella had excellent care. But more than that, Bella had believers.
This story first appeared in For the Kids, a magazine published by Johns Hopkins All Children’s Foundation.