Pre-eclampsia in the third trimester. A failed labor induction. An emergency C-section. This is the sequence of events that led up to the birth of Viviana, Brianna’s first child.
Though Viviana’s birth gave Brianna a sense of joy, it soon faded when she realized something was wrong. “She was blue and limp; she couldn’t breathe on her own,” said Brianna when describing her daughter at birth. “When I saw her, twenty-four hours later, she was in an incubator ready to be medevacked to another hospital.”
Viviana was on life support for over a month. At six and a half weeks old she’s finally discharged home from the neonatal intensive care unit, but the transition home was anything but easy. Viviana’s medical complexity required medical care and interventions that exceeded the routine wellness visits of typically developing children. By the age of two, emergency room visits were routine.
In early 2011, Brianna and her husband contemplated placing Viviana on a ventilator permanently after an episode of respiratory failure brought their little girl to the ER. But the idea of subjecting their two-year-old to surgery and connecting her to another machine was overwhelming, so they decided against it. However, another episode of respiratory failure at the end of the year made it evident that their little girl would need the ventilator permanently.
Up to this point, doctors had not officially diagnosed the cause of Viviana’s muscular dystrophy symptoms—severe muscle weakness, fatigue, and impaired muscle function. When Viviana turned three, medical genetic testing revealed that she had a form of Congenital Myasthenic Syndrome (CMS). This inherited neuromuscular disorder had weakened all of the muscles in her body, including those that help her eat and breathe.
The news that their daughter would eventually lose the ability to control her entire body was devastating. But the feeling of hopelessness and isolation lifted as they built a supportive network of people and resources that gave them a sense of community. Though their lives had been touched by Hacienda through Los Niños Synagis Clinics and Los Niños Hospital, it wasn’t until 2012 that Hacienda, through Los Niños Home Medical Services, became an extension of their family.
Continual turnover with an unrelated in-home care company compromised Vivian’s health and safety. So in 2016, Brianna and her husband faced yet another difficult choice—placing their daughter in a skilled nursing facility. Though they knew that Viviana would get the very best quality of care, as well as the social interaction they knew she needed, they were understandably apprehensive. “It had been suggested to me many times to place Viviana there [Hacienda Skilled Nursing Facility]. But I don’t think—until I really knew how qualified the staff was and how very warm everyone was—that I felt comfortable to do that because it almost felt like I was giving up [my] child,” expressed Brianna.
The choice was difficult, and equally unpopular with immediate and extended family members. But, it turned out to be one of the best decisions they could have ever made. “I really don’t have any doubt that we made the right choice because she’s getting a better quality of care,” said Brianna.
Thanks to Hacienda, Viviana and her mom are thriving. “She is no longer isolated, she has a much better quality of life, she now goes to school four days a week and she participates in a variety of social and learning activities; games, music therapy and even “karaoke” which she loves. She is happy and making friends. And at Hacienda Healthcare, she gets all of her nursing needs met and the family is able to visit as often as they can.” Brianna goes on, “I feel like I’m able to cope a lot better [as a parent] and I’m a better employee at work because I’m rested. I’m happier…that’s what gives me confidence…”