Television reporter and radio personality Elizabeth Espinosa has a nose for good stories. The Los Angeles native won Emmy awards for a half-hour documentary on child warriors in Uganda and Rwanda and for her coverage of the 2013 typhoon that ripped through the Philippines. She also produced and hosted a special report on disabled and abandoned children in El Salvador. Espinosa has always been drawn to stories about people dealing with adversity, in part because of her own experience growing up with a brother with special needs.
Delivered two weeks late by emergency C-section after a difficult pregnancy, Espinosa's brother was in obvious distress at birth. "Christian was blue. The umbilical cord was wrapped around his neck three times, tight," Espinosa says. Hospital personnel cut the cord, gave Christian oxygen, checked his spinal fluid, and referred him to a neonatologist, but Espinosa says her parents were never told he had suffered any injury. "The attitude from the hospital was, 'We saved your son,'" she says. "And they discharged him as a normal baby."
And Christian seemed like a normal baby to the then 10-year-old Espinosa, until he started missing major milestones and her parents began taking him to specialist after specialist. "My parents thought maybe he was autistic. That never ended up being the diagnosis, it was just one of many ideas," she says. It wasn't until her parents started researching Christian's labor and delivery records that they discovered he'd sustained severe brain damage due to hypoxia. Termed a "watershed injury," which refers to the area of the brain deprived of blood flow, the hypoxia affected Christian's ability to speak and his social skills and behavior. In addition, his fine and gross motor skills were affected, resulting in cerebral palsy.
"Hypoxia means there's a lack of oxygen to the brain," explains Donna M. Ferriero, MD, the W.H. and Marie Wattis distinguished professor and chair of the department of pediatrics and physician-in-chief at the University California, San Francisco Benioff Children's Hospital. Often referred to as hypoxic-ischemic encephalopathy, or HIE, the term means blood flow to the brain is compromised and oxygen isn't being delivered, she says. (For more about this condition, see "What Is Hypoxia?" below.)
A Life-Altering Diagnosis
Before Christian's birth in 1983, Espinosa and her older sister had enjoyed a close relationship and several family trips to Europe, thanks to their father's job with Mexicana Airlines. They were both excited about the prospect of a younger brother and were delighted when he was born. "He was super cute, and we couldn't kiss him enough," Espinosa recalls. But when Christian's developmental problems emerged, the family dynamic gradually changed. Espinosa's older sister moved out within two years (she was 16 when Christian was diagnosed, Espinosa 12), and Espinosa went from being "Daddy's little girl to an older sibling with new responsibilities. It isn't that my parents abandoned me, but all their focus was on Christian."
Not one to mope, Espinosa joined "Team Christian," as she calls it, and started accompanying her mother to meetings with school administrators and social workers, partly because her mother, who was born in El Salvador, didn't speak and understand English as well as Espinosa, and partly for moral support. Espinosa thrived in her role as her brother's spokesperson. "I was a strong voice for Christian. He was in a school district that knew me very well, and I was dubbed the sister from hell because I was always in there, saying, 'You need to give my brother this!'" she laughs. "I was so proud of myself!"
That activist spirit motivated Espinosa to major in political science at the University of California, Los Angeles, and to consider a career in law. "I wanted to become a lawyer because I wanted to sue doctors for medical malpractice," she admits. But she eventually changed her mind. "I remember thinking, 'This is a bad idea.' Every client was going to be Christian. I was going to take it so personally." Instead she redirected her energies into reporting, where she believed she could speak for those without a voice and bring attention to injustices and hope it would effect change.
A Champion for Others
Since she was a little girl, Espinosa has prayed for her brother to learn to speak. "I had a diary in eighth grade, and I wrote, 'Dear Diary, Christian still doesn't speak, but I'm going to make him speak.' I would put prayers in there."
Now 31, Christian still doesn't speak, but Espinosa, fluent in five languages, including American Sign Language, does enough talking for the both of them. For three years, up until 2014, she was the anchor for "Sin Limites," a live national Spanish-language talk show about current events, breaking news, and in-depth investigations on CNN Espanol. Now, she co-hosts "Thompson and Espinosa," a daily talk-radio show on the iHeartRadio network that discusses current events, pop culture, and breaking news. She also co-hosts the television show "Studio SoCal," a local public affairs program covering in-depth news stories on the Los Angeles PBS station, and she continues to work as a news reporter for the TV station KTLA.
She uses these platforms to raise awareness about people with disabilities and special needs. "I try to get the word out at every opportunity. I'm always looking for those stories that keep the dialogue going," she says. She's also involved with various grassroots organizations that support the rights of the disabled, such as the Special Olympics in California, Ability First, and Autism Speaks.
"I find it very disheartening that politicians will slice and slash social service budgets that affect a population that can't go out and protest," she says. "As family members, we may not want that to happen, but who has the time to go down to the capitol and rally when you have to feed your kid or give him a shower or be on top of his insulin shot 24 hours a day?"
Espinosa says the disabled population in California lost a lot of services during the 2008 recession, but "we're trying to turn that around" with help from organizations like the Association of Regional Center Agencies, which advocates on behalf of Californians with developmental disabilities, and the state's system of independent non-profit regional centers.
Constant Caregiving
Three decades later, Espinosa is still one of Christian's primary caregivers, along with her parents and a revolving door of home aides. She spends almost every Saturday with him, helping him with his daily toileting and reinforcing his socialization skills. She also continues to work at getting him appropriate social services and enrolling him in different programs for people with disabilities or who are low functioning. "I have yet to find the right program for Christian," she says. "We are always told he has too many medical problems or his behavior is too much to handle."
Because of his cognitive deficits, Christian can't take care of himself, and because he can't speak, he can't tell others how to help him take care of himself. This has contributed to several medical problems, including type 2 diabetes, hypertension, an ulcer, and irritable bowel syndrome. He also has arthritis, and he recently had surgery for a detached retina. "All these conditions get worse because he can't tell us that he's having pain or that his vision has changed," Espinosa explains. "I can't see numbness or left arm pain or a migraine. That makes everything so challenging."
And Christian isn't child-sized anymore. He's more than six feet tall and overweight, says Espinosa, and he has no impulse control and is often anxious. "Christian looks like a normal guy who probably plays on a football team," she says. "But he's really like a baby who requires 24-hour supervision." Caregivers must administer daily medications and regular insulin shots as well as bathe and dress him. And while Espinosa says her brother can feed himself, he can't use a knife or fork, cut his own food, or drink from a straw. Instead, he holds a spoon in his right hand to eat.
Caring for someone like Christian requires skills that are hard to quantify, she says. "How do you hire for compassion? How do you hire for patience? Because of my brother's lack of communication, there's such a learning curve to understand what he needs or wants." When interviewing potential aides, Espinosa says she watches how they interact with her brother and relies on her gut feelings. "I look for love and faith because that translates into patience and strength."
Managing Stigma
Growing up with a mentally disabled brother who often behaved inappropriately—he would take off his shorts at the beach and throw them into the ocean, for example—was difficult, but Espinosa says she was never ashamed of her brother. "I have a very strong mother who from day one taught us that there was no space for shame," she says. "I've always been fiercely protective of my brother." She remembers telling people who stared, "If you don't like this, turn away."
That stigma continues to dog Espinosa and her brother. Just recently, she had to calm a woman who became enraged when Espinosa brought her brother into the women's restroom because he needed to use the toilet. "She almost started a physical altercation with me," Espinosa says. "'How dare you bring him in here?' she yelled. She wanted to get her husband involved."
Experiences like these are why Espinosa chooses her outings with her brother carefully. She only takes him to the local restaurant where the owner has a special needs child. If they go to a park, they visit when it's not crowded. "People don't get it," she says. "Sometimes the hardest part of caregiving is dealing with so-called 'normal' people, who often just can't see beyond black and white."
Lessons Learned
Despite the daily challenges of caring for her brother, Espinosa says she feels blessed. "Christian has shown me that we are all alike, regardless of race, gender, sexual orientation, immigration status, or severe physical or cognitive deficits," she says. "We just want to be seen and heard. Even the most disabled. They want us to know they are there."
That's what Espinosa tries to do every day: acknowledge her brother and others like him through her television and radio work and her personal commitment to advocacy organizations. She also vows to keep another promise to Christian: "I want him to feel useful. I want him to be surrounded by people who will make him feel good and positive."
She may never have gotten him to talk, but Espinosa has given her brother a voice.
What Is Hypoxia?
Elizabeth Espinosa's brother, Christian, sustained permanent brain damage when blood flow to his brain was compromised during birth, resulting in a lack of oxygen—a condition known as hypoxic-ischemic encephalopathy (HIE) or neonatal encephalopathy.
Sadly, the condition is not uncommon. "HIE affects about one to two per thousand live-term births," says Donna M. Ferriero, MD, the W.H. and Marie Wattis Distinguished Professor and chair of the department of pediatrics and physician-in-chief at the University California, San Francisco Benioff Children's Hospital. "Probably 15 to 20 percent of newborns with HIE die. Of those who survive, as many as 25 percent can have permanent brain damage."
Causes of the condition vary. Immature lungs and undeveloped circulation can cause it in babies born prematurely, says Dr. Ferriero. In full or late-term babies like Christian, hypoxia may occur when the umbilical cord wraps around the neck or the placenta breaks off from the wall of the uterus.
Some HIE risk factors are modifiable, says Dr. Ferriero. One strategy is to "avoid letting the pregnancy go too long post-term. The placenta gets old and blood flow is compromised. Good prenatal care and proper nutrition also improves outcomes," she says. Dr. Ferriero also advises women with high-risk pregnancies (those who are over age 40, have underlying conditions such as heart or thyroid disease or diabetes, and have had multiple pregnancies) to find a doctor that specializes in those types of pregnancies.
"When hypoxia lasts more than four or five minutes, parts of the brain critical to normal function begin to die. That's when viability and function become severely compromised," says Jim Koenig, PhD, program director for the Stroke Program in the Neural Environment group at the National Institute of Neurological Disorders and Stroke.
It's not clear how long Christian was deprived of oxygen, says Espinosa, but he was born with the umbilical cord wrapped around his neck and his skin was blue. "It was a severe loss of oxygen," she says.
Although he was not diagnosed with HIE upon discharge, Christian began showing signs of brain damage early on. "Christian had no motor skills and he didn't talk," Espinosa says. Lacking both motor and speaking skills is indicative of a global brain injury, one that affects both the white matter, which controls motor skills, and the gray matter, the brain's information processing center, says Dr. Ferriero.
Irreversible Damage
Unfortunately, little can be done to reverse the brain damage. In some cases, infants can be treated for hypoxia by lowering their body temperature, a procedure known as therapeutic hypothermia. "The newborn is put on a cooling blanket or has a cap with cold water placed on its head within six hours of delivery. The target body temperature is 33.5 degrees centigrade (92.3 Fahrenheit) for 72 hours," Dr. Ferriero explains. It's not clear how or why this treatment positively affects patients; Dr. Koenig believes it helps reduce swelling, while Dr. Ferriero thinks it helps reduce metabolic demands on the brain.
"Hypothermia is not 100 percent effective. It seems to work in only about one-third to half of infants," Dr. Koenig says.
Although the damage to the brain cannot be reversed, physical and occupational therapy can mitigate the effects of hypoxia, says Dr. Ferriero. "Through physical therapy, children can be taught how to move properly. Occupational therapists can help them regulate their fine movements better, and speech and language therapists can help improve speech."
Life with a sibling who has brain damage due to hypoxic-ischemic encephalopathy is challenging, Espinosa admits, but there are rewards, too. "As difficult as it can be at times, I'm beyond grateful and so thankful for my little brother. I always say that Christian has given me my humanity," she says. "I'm so proud of him because he has not just taught me what love is, he's given me unconditional love."
Help for Hypoxia
- Hypoxic-Anoxic Brain Injury at Family Caregiver Alliance: 800-445-8106
- Anoxia and Hypoxia at Birth Injury Guide: 877-415-6603
- Hope for HIE: 248-574-8099