Name: Tina Santos
Location: Washington, United States
Child’s Birth Year: 2019
Keywords: Advocacy Work, Blogging, Trusting “Mom-Gut”
After having a miscarriage with twin boys a year before, Tina desperately needed things to go well during her pregnancy with Olivia. There were a few minor issues along the way—around twenty-eight weeks in, Tina was told Olivia measured small, and Tina developed gestational diabetes toward the end of the pregnancy. Because Olivia wasn’t growing at the rate she was supposed to, the doctors informed Tina that, when she delivered Olivia at thirty-seven weeks, her daughter might need lung support. But never was she warned about what was to come.
After Tina pushed one final time during her induced labor, that fell twenty-three minutes short of forty hours, the doctor reached out to lay Olivia on Tina’s chest. When Olivia only made it as far as Tina’s lower abdomen, instead of all the way to her chest, like she is supposed to, the doctor blurted out, “Wow, that’s a really short umbilical cord.”
As a new parent, Tina didn’t know how long the umbilical cord was supposed to be—in that moment, all that mattered was the warmth that spread across Tina’s skin as she came into contact with Olivia. She vowed to protect and love her beautiful baby girl unconditionally. Her husband, Daniel, then cut the cord. They knew the doctors needed to see if Olivia would be able to breathe on her own, so, after a moment of soaking in the overwhelming joy of parenthood, they handed Olivia off to a NICU nurse for the necessary assessments.
At merely 4 pounds 5.6 ounces, Olivia was tiny. But what shocked Tina and Daniel most as they handed Olivia off to the nurse was not her size, but her pale gray complexion and the floppiness of her arms. Images of worst-case scenarios swirled through Tina’s mind, and it seemed like hours before they received an update about Olivia. When the door finally opened again, sounds of cheers filled the room, and it was announced that Olivia was safe, healthy, and able to thrive on her own. Tina wanted so badly for this to be the end of her birth story. She wanted to believe that everything was okay like the nurse said it was, that all the pain she’d endured along her journey to becoming a mother—from the loss of the twins to the anxieties during pregnancy—was finally over. But life is messy and unpredictable, and so, too, was the HIE journey they didn’t realize they were just beginning to embark upon.
Surrounded by their mothers and Tina’s siblings, Tina and Daniel tried to hold onto the happiness of being new parents. As she held Olivia, all bundled up in a white hospital blanket, Tina was amazed at how something so tiny could also be so precious. But she also couldn’t help but notice how pale Olivia was, like a fragile porcelain doll—a delicate and beautiful, but inanimate, motionless, porcelain doll. Tina didn’t want to seem like one of those crazy, overly anxious mothers, so she casually mentioned her concerns about Olivia to the labor and delivery nurse. The nurse tried to stimulate Olivia multiple times, but didn’t get much reaction. Concerned, she told the main NICU nurse that she was uncomfortable with Olivia being left for the night with her parents, since her tone and color were not typical. However, the NICU nurse confidently stated that, since Olivia had passed the necessary “tests,” these worries were unfounded. So, Olivia was left with Tina for the night.
During the night, Olivia wouldn’t feed at all, and, when she laid down, she seemed eerily still. Tina tried to convince herself not to worry. The NICU nurse, without hesitation, had said Olivia was okay, so it must be true, right? “Right,” Tina kept repeating to herself. “Wrong” was not an answer she could bear.
But the next morning, all of Tina’s visceral fears came to life. Olivia went to the NICU to get labs done, where it was discovered that her oxygen levels were severely low, in the 70s. Olivia’s visit to the NICU was just supposed to be the final, quick “okay” before going home. So, when Daniel and a nurse came back to Tina’s room and explained that Olivia had been admitted to the NICU indefinitely, she completely broke down. Even with both Olivia’s grandmothers and her uncle in the room, Tina couldn’t hold back the tears that seemed as if they would flow forever.
After a couple hours to recuperate from the lengthy labor and delivery, Tina was wheeled to the NICU to see Olivia. Nothing could have prepared her for the terrifying image she saw. Olivia was hooked up to a large CPAP machine, an IV was connected to her scalp, there were twenty-eight EEG leads coming out from her head, she had stickers all over her chest, and she had a towel strapped down over her tiny body. Guilt and confusion flooded over Tina, and the whole world just seemed so surreal…this had to all be some sort of sick nightmare. Her prayers and hopes shifted from wishing for a healthy baby to wishing for a baby who was still alive.
A pediatric neurologist finally explained what all the machines and wires were for, and, after a few MRIs and EEGs, Tina heard that Olivia had suffered a perinatal stroke, which left the entire back part of her brain severely damaged and filled with cysts. During the twenty-six days in the NICU, the word Tina remembers hearing most was—stroke. She did not hear the term HIE for quite a while, and she felt so lost…like the gloom and doom would never end. Upon receiving the MRI results, the neurologist said that Olivia would likely have a lifelong seizure disorder, be completely blind, have a speech delay, and develop cerebral palsy. Tina asked for the neurologist to rephrase some of what he was saying, searching desperately for even a tiny sliver of hope. As a fix-it type of person, she remembers asking him, “What can we do to get out of this situation?” Unfortunately, there was no escaping the new reality they would have to learn to live with.
Those twenty-six days in the NICU were exhausting and characterized by an abundance of emotions, but Tina and Daniel were there every step of the way. They stayed in a room in a different section of the hospital, and the communication from the NICU to them was fragmented at best. Tina quickly learned that, to stay updated about what was going on with Olivia’s care, she and Daniel needed to be present at rounds each morning. At the hospital, Tina and Daniel learned the basics of how to take care of Olivia, how to bathe her, feed her, and give her seizure medications. But, other than that basic training, they didn’t receive resources, an explanation of what HIE was exactly, or clear instructions for next steps. They were essentially discharged with the advice to just take Olivia home and love her.
In the beginning stages of being at home, Tina essentially operated on survival mode. Her days were filled traveling from appointment to appointment, and, by the end of the day, it was hard not to feel completely drained. However, Tina is grateful for all the support she did have along the way. Both of Olivia’s grandmothers are extremely engaged in her care, willing to lend a helping hand. Tina and Daniel’s siblings have also begun to learn how to best take care of Olivia. In addition, Tina is grateful that, because she worked for her stepdad part time, he was flexible with her if she couldn’t come in for work at the last minute because Olivia was having seizures. And when Tina learned about Hope for HIE from a former coworker a few months into Olivia’s HIE journey, she finally found a community of people who understood what she was going through. By connecting with different HIE moms, Tina learned about different treatment options and conditions associated with HIE, and that information gap she struggled with for all those months began to close.
Even after the neurologist said that Olivia would be completely blind, Tina swore that, every time she opened the blinds a little bit to let light seep in, Olivia flinched. When she told others about this, they dismissed it, saying Olivia probably just heard a faint noise when the blinds moved. They probably thought Tina was in denial, unwilling to accept a reality in which Olivia was fully blind. However, upon joining Hope for HIE, Tina learned about the possibility of cortical visual impairment (CVI). She took Olivia to an ophthalmologist, where the diagnosis of CVI was confirmed. After all that time being labeled as “in denial,” it felt empowering for Tina to know that her mom-gut had been right all along.
Another aspect of Hope for HIE that Tina really appreciates is the constant collaboration among providers and parents, ensuring that the knowledge shared is reliable and evidence based. And, in a journey where the sadness can feel all-consuming at times, the group is a source of hope and a beacon of light. Learning about neuroplasticity through the forums, and how the brain can adapt and evolve over time, has been a game-changer.
For so long, Tina felt suffocated by the trauma and guilt associated with Olivia’s birth. She lay awake at night thinking of all the what-ifs: What if she had been more adamant to the nurse that Olivia was not okay and should have spent that first night in the NICU? What if she had realized something wasn’t right sooner? In addition to the HIE journey, Tina started on a journey of self-forgiveness, realizing that she did her best, given the medical knowledge she had at that time. She may not have been perfect, and she will never be perfect, but who is? On top of all that, she was forced to cope with a different type of loss…not the loss of life in the literal sense, as with her miscarriage, but the loss of the life she thought she would share with her daughter. She’d had dreams and visions of Olivia running around in the backyard with the dogs or Olivia joining sports teams in school. In an instant, all of this was flipped upside down.
In the wake of this loss, Tina lost sight of who she was as an individual, as a mother, and as a partner. There were days where she felt such deep shame—shame for not being that perfect mother for Olivia, shame for feeling sad thought her daughter was still alive, shame for arguing with Daniel instead of considering the unique pain he felt as a father. She realized that keeping all these feelings buried was only preventing her from rediscovering who “Tina” was in this new, unanticipated life. So, with the encouragement of a friend who blogged throughout his own mental health journey, Tina decided to start her own blog, pouring her heart out into the world. For her, putting her thoughts and emotions to paper and being vulnerable about her feelings—the good and the bad—has been irrevocably cathartic and freeing. Since writing her first post when Olivia was five months old, she has received so many positive responses from friends and family members who are appreciative of the rawness of it all. Even though it’s terrifying to share the deepest parts of herself for anyone to judge, Tina has felt more empowered than ever. Through not being afraid to speak up, Tina hopes she can inspire others to similarly open up and realize they’re not alone in their struggles.
In addition to blogging, Tina was willing to try anything to climb out of the hole she felt trapped in. She sought therapy to deal with her trauma, read self-help books, and even posted different motivational quotes on her mirror. To any HIE parent out there who feels adrift in a foreign world, Tina cannot emphasize enough the importance of finding what works best for you to begin to move forward. Tina quickly learned that, without some sort of outlet, or way to engage in self-care, the days can quickly consume you. For her, there are days where she must get work done, take Olivia to multiple appointments and therapy sessions, and, on top of that, try to cook, clean, and maintain the household. For a while, she felt completely depleted before bed, and her mindset was focused on merely surviving the day, instead of proactively enjoying the day and remaining grounded in it. Now, she still has days where she feels like she’s barely holding on. Yet, she has begun to open herself up to more joy and lightness in her life than she ever thought possible when she first learned about Olivia’s HIE. She is more honest with Daniel about how she is feeling, and she has realized how much of a difference having a partner who is on the same page as her has made in her own life
Now, Olivia is an animated, energetic girl. She loves being around people, talking on FaceTime, and moving around a lot. Her smile can brighten up even the darkest of rooms. Even though they have a long way to go, and are just starting on their journey, seeing how far Olivia has come is hope in and of itself.
Tina is not only proud of who her daughter is becoming, but she’s proud of who she herself is becoming, thanks to Olivia. Olivia truly is the greatest teacher Tina could have asked for, teaching lessons about accessibility, inclusion, advocacy, and patience. Before having Olivia, Tina never mocked people with disabilities, but she also never thought twice about accessibility or paid attention to her terminology. Now, Tina is a staunch advocate for those with disabilities, educating those around her about accessibility through her blog, social media, and daily conversations.
In addition, because of Olivia, Tina has learned what true patience is. She has learned that a developmental delay is a comma, not a period, and, even if Olivia won’t be rolling over tomorrow, it’s finding value in the seemingly small things that matters.
When the road ahead seems too daunting, one saying really resonates with Tina is: “Is it impossible or do you just not know how? Because if you don’t know how, that means there’s a way.” It reminds her that, even with HIE, it’s not impossible to live happily. Just because progress is slow, it doesn’t mean that Olivia will be stuck where she is forever. Even if Olivia may never reach certain milestones, this life they are building together will have no shortage of love, faith, hope, or joy. The relevant question is not, “What will tomorrow look like?” but “How can we find the meaning in today?”
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