'A mother's heart is never wrong': How a Phoenix mom supports children with special needs
At 28 years old and with a 7-year-old daughter, Paulina Serna was happy with her pregnancy from her second marriage.
That bliss was shortlived three months in after receiving some shocking news: she was pregnant with twins and one of them was diagnosed with a congenital disorder and a malformation in the brain.
For the young mother, born in Ajo, Arizona, and raised in Puerto Peñasco, Sonora, this was a shock — she would have to decide whether to continue with the high-risk pregnancy, accepting the difficult life that one of her children would experience, or end it and lose her two babies. She would lose neither.
On Oct. 29, 2008, Paulina Fernanda Serna was born healthy; her brother, Luis Heberto Serna, was not.
“I didn't even see him (when I gave birth), he didn't cry, they took him away… They put her in my arms, but not him,” Serna shared in an interview with The Arizona Republic.
Luis Heberto's first hours of life were spent in surgery. He underwent eight hours of spinal surgery due to the spina bifida he was born with, and spent 21 days in the Neonatal Intensive Care Unit (NICU) at St. Joseph's Hospital in Phoenix. To date, he has undergone 15 surgeries. His mother has fearfully had to say goodbye to him three times.
Today, at 15, Luis Heberto is an intelligent and joyful teenager, is a student at Cesar Chavez High School in Phoenix and has shared his life experience on several platforms. He's an inspiration and a role model for many, much like his mother.
At 44, Serna is a single mother caring for two teens and a young adult, her eldest 22-year-old Alondra Isabel Serna. Her dedication to Luis Heberto's journey led her to become a part of the Raising Special Kids organization, where for the last decade she has worked to help families and mothers like her provide the best care for their children with special needs.
From a 6 year lifespan to a thriving teenager
Luis Heberto lives with spina bifida, which paralyzes him from the waist down; cerebral palsy, which limits him from the waist up; and hydrocephalus, a neurological disorder that causes the accumulation of fluid within deep cavities of the brain.
He grew up surrounded by doctors, nurses and therapists, facing multiple surgeries and unfavorable diagnoses.
When he was born, doctors gave him 5 to 6 years to live, telling Serna he would not walk and that he might never talk. And against all odds, Luis Heberto is thriving, has undergone 15 operations, speaks English and Spanish fluently, excels academically, is self-confident and, above all, very loved.
His early years were nothing short of difficult, Serna said. For the first six years of Luis Heberto's life, he spent most of his days in and out of hospitals, spending up to four days a week undergoing treatment.
“My son did not crawl, he did not walk, we had many hours and hours of therapies… early intervention from the age of 3 months, therapy to get up, to fall, equine therapy, swimming, psychologists, physical therapy, occupational therapy, language therapy… everything, every day,” Serna listed.
Like any loving mother, she refused to give up on him, remembering a moment when she said to God "'I didn't question anything, and now you're going to take him away from me?'" I refused, she said.
Between the ages of 3 and 4, Luis Heberto had to undergo surgery for a hernia in the cerebellum and that was the most difficult for her, since her little boy was in a coma for three days. Doctors told her there was a possibility that he would forget things, that he might not recognize her, when he woke up. It was the first time Serna said goodbye to him, she said, expecting the worst.
“Those three days for me were like years and I remember that I would raise the chair or lower the bed so I could lie down and count his breaths. When he woke up the first thing he said was 'mamá'... he knew that his mother was there,” Serna recalled.
After that surgery, he began to lose significant weight and developed gastrointestinal problems. This time, a very young and tired Luis Heberto asked his mother to "be okay" so that he could go to a place "where I am not sick, where I do not suffer, where I do not feel pain."
Again, his mother refused to let him go, asking him to give the treatment a chance for three days. "Then we can go home," she recalled telling him.
After undergoing treatment and being fed via a gastrointestinal tube, three days later they returned home, as his mother had promised.
His last successful surgery took place two years ago.
Mom helping moms find care for their own
Raising a child is no easy task. Add lifelong specialized medical care and little-to-no understanding of healthcare processes to that, and any parent would be left amiss. When Luis Heberto was barely 2 months old, Serna met Dolores Rios, a family support specialist at Raising Special Kids who, like Serna, has a son with spina bifida.
That changed everything.
Raising Special Kids, an Arizona nonprofit with locations in Phoenix, Tucson and Yuma, provides information and support to families raising children with disabilities.
Rios was pivotal in helping her figure out care for her son. She had already gone through what Serna was experiencing and understood what was to come. Rios supported her, guided her and motivated her to keep going.
“She understood my feelings, my fears. I have always said that mothers who have children with a medical condition or with a special need condition, disability or whatever you want to call it, have feelings that a mother of a typical child does not have,” Serna said.
The support and compassion she received from Rios inspired her to get involved with Raising Kids. After volunteering with the organization for some time, Serna was asked to become a parent leader to support other families and mothers like her.
“(Rios) helped me a lot, I felt alone and I found someone who understood me. I needed someone like that in my life, so I also wanted to give another mother that comfort, because it is a comfort,” Serna said.
Later, after retiring for a time to care for Luis Heberto, she became a bilingual family support specialist, working in every position they would throw at her — early intervention, referral center, certified family support and, finally, fundraising, a position through which she currently raises funds for families in need.
'A mother's heart is never wrong'
Through her work as a bilingual support specialist, Serna supported families by documenting their situation and then providing them with a guide to resources in the community and steps to follow for care as well as how to qualify for other services.
She helped Yuridia Martinez, a south Phoenix resident and mother to a teenager with autism struggling with multiple medical problems, including chronic abdominal pain. Serna came into her life when she needed it most, Martinez shared. Because her son would not cry from the chronic pain he was experiencing, his medical condition was often overlooked by doctors.
“She helped me find a doctor. She told me how important it was for the doctor to listen to you and understand your child's needs, she helped me communicate, to know how to use technology to communicate with them, and know how to address myself,” Martinez said.
Martinez will never forget a phrase that Serna said to her: "'Yuridia, a mother's heart is never wrong.'" Those words helped her advocate for her son, look for specialists who understood his situation and seek alternate treatments.
“I love seeing when parents are empowered and lose that fear. For me, receiving that 'God bless you', 'thank you very much', is the greatest blessing I can feel and it is something that fills my heart... there is no way to do (this work) if you don’t have empathy, respect and heart,” Serna said.
Although Serna doesn't just work with Latino families, supporting them is rooted in her own experience and identity. But her work, and Rios', is also helping to fill a need.
The most frequently cited barrier for accessing care within the Latino community is a lack of Spanish proficiency amongst medical professionals, according to a 2023 study published in the Journal of General Internal Medicine.
“I am an American citizen and I am proudly from Sonora (Mexico)... I love the connection we make with the Hispanic community and I really like working with the Hispanic community, it feels like I'm at home and I love seeing the transformations,” said Serna.
'She is simply my hero'
Luis Heberto dreams of studying medicine, although hasn't decided whether to become a neurosurgeon or a forensic doctor.
He dreams of getting married, having children, building a life, just like his mother has done. At 15, and with so much learned over the years, he has the utmost respect for his mother, who has shown him the value in fighting for himself.
"She is simply my hero, because she always, no matter what is happening in her life, always keeps us going with a smile," said Luis Heberto. "She taught me to be strong."
The values that Serna has instilled in her children are some she hopes they pass along to others, especially when they have their own children.
“My mother has always told us that the man is no more than the woman, that in a relationship they have to work together. I'm going to teach my children the same thing," said Luis Heberto.
For this Mother's Day, Luis Heberto and his sisters plan to celebrate the woman who inspires them to be better people, to be brave in the face of adversity and to be respectful and grateful to others.
“My mom is someone that I can trust in everything, she is someone that if I have a problem she is the first person I look for,” he said.
Reach La Voz Arizona reporter Nadia Cantú at nadia.cantu@gannett.com or on X @nadia_cantu.
This article originally appeared on Arizona Republic: Raising a child with special needs motivated this mom to help others
