Alana’s story: A journal full of hope

“You’re a wonderful mother and Alana is incredibly lucky to have you by her side.”

These words were written in the journal that sat beside baby Alana’s crib, for a week in the NICU, followed by two weeks in Neurosurgery. Her mom, Joselin, used the journal to write down all the new medical details of her daughter’s complex medical issues and the names of the many doctors that came to see her.

The nurses wrote in it too. What started as a place to track medications, diagnosis and doctors became a way for Joselin and Alana's care team to encourage one another. Some mornings, Joselin would wake to a heartfelt note from Alana's night nurse, Madeline Rullman, RN, at Children’s Health℠.

“Sometimes, the notes made me cry, but they always helped give me strength,” says Joselin.

Two unbelievable surprises

In November of 2024, Joselin received two of the biggest surprises of her life. She was unexpectedly pregnant and her baby had a condition she’d never heard of: spina bifida.

Soon after, she was on a Zoom call, being educated about spina bifida, a condition where the spine doesn't fully close during pregnancy, leaving part of the spinal cord exposed. On that call, she also learned how the expert team at Children’s Health planned to care for her daughter.

Immediately after birth, Alana was transferred to Children's Health to have surgery from a world-class neurosurgery team to close the opening in her spine. Her team also monitored her for hydrocephalus, a buildup of fluid in the brain that's common in children with spina bifida.

After a week in the NICU, she underwent another surgery to place a shunt that drains the extra fluid.

“At the beginning, it was really scary. I would cry every day, I would go to church every day and I just take walks and breathe with her,” says Joselin. “But the incredible people on her neurosurgery team made everything easier and comfortable, which helped me so much.”

Celebrating milestones

Rullman helps families understand there’s a huge range of ways that spina bifida can affect kids and reminds them to celebrate the small wins.

“When Alana was born, her feet pointed towards her head and she also had a clubbed foot,” says Rullman. “But she was spunky and a fighter. I called her ‘my little princess’.”

While recovering from her back surgery, Alana had to stay on her stomach to protect the incision on her back. Physical therapists helped keep her comfortable, while nurses and lactation consultants taught Joselin how to safely feed and hold her.

"One day, Joselin told me how hard it was not being able to dress Alana in newborn clothes," says Rullman. "So I found a shirt and altered it around her incision. Seeing Alana dressed like any other baby brought Joselin a little piece of normal."

Drawing strength from every possible source

As a single mom, Joselin relied on help from her mom, her aunt and other family members – to be there for Alana and for her other daughters too.

“Jocelyn is truly an amazing mom. She was there for every moment for Alana,” says Rullman. And somehow, she still managed to stay super involved with her other two kids’ lives, frequently Facetiming with them.”

Joselin leaned on every source of support Children’s Health offered.

Lauryn Shackelford, Child Life Specialist at Children’s Health, helped her better understand spina bifida and gave her hope for Alana's future. And Kirsten Eason, Chaplain at Children’s Health, prayed with her before surgeries, comforted her on difficult days and even helped arrange for Alana to be baptized in the hospital.

“The care team even helped find a dress for her to wear for the baptism,” says Joselin. “It was so special.”

The quiet, in-between moments

While Alana was in the hospital, she underwent a second back surgery to further close the opening in her spine and a routine procedure to fix a shunt malfunction. She also had visits from urology because she had trouble emptying her bladder and needed to use catheters.

But in between procedures and specialist visits, there were also many long, quiet hours.

“Madeline [Rullman] would come in at night and help me wash the bottles I filled from pumping. Or she’d help get Alana to sleep so I could rest. It truly felt like she was a friend, just trying to make things a little easier and more comfortable for me,” says Joselin.

Rullman remembers Joselin just as fondly.

"People think nurses just treat a diagnosis," says Rullman. "But some of the most important care happens in the quiet moments. Joselin made just as big an impact on me as I hope I made on her."

Embracing optimism and love

Now, at 18 months old, Alana gets around with a walker, wheelchair and braces – and is so happy to be on the move.

She loves to dance, eat fruit and her mom's “sopita de fideos” (noodle soup) and greets everyone she meets with a smile.

“Everyone just loves Alana and she brings so much joy into the world. I wouldn’t wish a difficult diagnosis on anyone. But I also wouldn’t trade my experience for any other,” says Joselin.

Alana still needs daily catheterization, ongoing therapies and regular medical care. And she’ll soon have surgery to help with her sleep apnea. But Joselin has learned not to let uncertainty overshadow hope.

One day, Joselin hopes Alana will read every handwritten note from each and every member of her care team in the journal that sat beside her hospital crib.

"She'll see how deeply she was loved from the very beginning,” Joselin says.

Learn more

Children's Health brings together pediatric neurosurgeons and specialists from across multiple disciplines to provide coordinated, long-term care for children with congenital neurological conditions, including spina bifida. From diagnosis through every stage of childhood, our team is here to help children reach their full potential.