Season for Caring: Meet the Castillo Family
Category: Client Story
December 6, 2021
Natalia started working with Any Baby Can’s Nurse-Family Partnership (NFP) program in 2019. She was a single mom and newly pregnant. During a routine check-up, she found out that her daughter was going to be born with abnormalities, but it wasn’t until Mariana was born that they knew the extent of the care she would need.
Mariana was born prematurely at 34 weeks and there were complications immediately. Doctors didn’t know exactly what was wrong. Among other things, Mariana couldn’t swallow, her hands had malformations, and she had low muscle tone. Mariana’s stay in the NICU was marked by additional challenges.
One Challenge After the Next
At the time, some medical professionals encouraged Natalia to consider taking Mariana off of the ventilator, as they felt she would not have a good quality of life. Her team of doctors suggested to either consider letting her pass away, or doing a tracheotomy, insert a G-tube and commit to a lifetime of medical care. Natalia had a gut feeling to proceed with the surgery when Mariana opened her eyes and looked at her during that difficult decision-making time. She wouldn’t give up on her daughter.
After the surgery, Mariana was finally diagnosed with Central Core Disease, a rare neuromuscular genetic disorder. After 135 days in the NICU, Mariana was sent home with a slew of home-care equipment and instructions. There were doctors’ appointments and specialists, therapies and detailed charts. Natalia was grateful to have her NFP nurse by her side during these difficult months.
“Natalia has always been on top of Mariana’s medical needs, learning new skills and adapting to every change in her care. I think more than anything, those first few months in the NICU she just needed someone to tell her that she was doing a great job, and to give her permission to breathe and take moments to care for herself,” says Haley Snodgrass, RN, BSN, Natalia’s NFP nurse.
Mariana’s grandmother Irma lives in the home and is certified as a childcare worker, so she provides skilled support on nights and weekends, giving mom some opportunities for important self care. Despite the overwhelming task of caring for her daughter, Natalia remains positive and incredibly organized in her child’s care.
Mom’s Dedication
Natalia is organized, dedicated, creative and resourceful in the management of her work and Mariana’s care. She is eager to learn and has been proactive in finding ways she can support her daughter. She has demonstrated a perseverance in providing for her daughter in the best possible ways and has restructured her work life so she can be present to work alongside the home healthcare staff, including Early Childhood Intervention (ECI) services through Any Baby Can.
As Mariana’s only financial provider, Natalia works hard to balance all of it, and has been fortunate that her employer has allowed for some flexibility. Natalia is doing her best to plan for the future and set goals for a stable career.
An Advocate for Others
Natalia is a passionate advocate for other families who have children with complex medical conditions or diagnoses. She was invited to participate on a panel of parents to share with NICU nurses the best ways to support parents who have children who utilize a trach. She enjoys the opportunity to give back and provide comfort and support to other parents experiencing some of the same challenges. Natalia shares with others her life philosophy,
“It may be a bad day, but it’s not a bad life.”
How You Can Help
Support this amazing mom and Any Baby Can by considering a gift to Season for Caring (Select “Any Baby Can, Castillo family”).
Purchase directly from the family’s Amazon wish list: https://www.amazon.com/baby-reg/castillofamily-january-2022-austin/1O9WBE2LQ6B24
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