Name: Lauren and Henry Perez
Location: Texas, United States
Child's Birth Year: 2015
Keywords: HIE Dad, Loss Parent, Pregnancy after HIE, Cerebral Palsy, PTSD & Mental Health, Supporting Your Partner, Self-Care
Lauren and Henry currently live in Southeast Texas with their three-year-old daughter, Harper, and their seven-month-old son, Olivier. After meeting in eighth grade, they went on to date for ten years before getting married. Soon after that, they found out they were expecting their first child, Eliana. After all these years of loving each other, Lauren and Henry were so ready to expand their circle of love. But when Eliana was born on her due date of September 18, 2015, the parenthood they thought they were jumping into could not have been further from reality.
In the past, Lauren had had traumatic experiences with hospitals, so she decided to give birth at a birthing center. Lauren’s pregnancy was completely normal, and, even though she had heard stories about horrible morning sickness and nausea, she never experienced any of that. Because of this positive experience, she never expected anything to go wrong during the birth. But during that unbelievably long thirty-six-hour natural labor, all did not go as expected. The labor was so long that Lauren was put on oxygen for fatigue. Well into the labor, the midwife realized that, on the external monitor, Eliana’s heart kept dropping and coming back up. During the next round of contractions, Eliana was pulled out, pale and lifeless. She was born with a heart rate, but she was not breathing on her own. It took the ambulance twelve terrifying minutes to arrive at the birthing center. Immediately upon their arrival, Eliana was intubated and taken to the local hospital.
After being stabilized, Eliana was quickly transferred to a larger hospital for cooling therapy before the time window expired. Eliana would go on to spend forty-three days in the NICU, where she was the odd one out, referred to as the “big baby” amongst all the preemies. In those first few days, Lauren felt so lost, like this couldn’t possibly be real life. She always believed that everyone comes into the world the way they are meant to, but she had trouble finding that reason for Eliana. No one could tell her why this all happened in the first place, and there still are no definitive answers about what led to the HIE event.
On day two, the neurologist finally met with Lauren and Henry, explaining that Eliana had suffered a major brain injury, but that they would need to wait to do a repeat MRI for more answers. At that point, all the neurologist could tell them was that Eliana would have “challenges” growing up. To what extent, he couldn’t tell. This gave Lauren and Henry little to work off of, as they attempted to piece together what their life might look like down the road. It wasn’t until two weeks into the NICU stay that they even heard the term “HIE.” Even that was nonchalantly thrown into conversation without full explanation.
For Henry, his preferred means of finding out information was mainly by asking the doctors questions. But to find clarity she had yet to be provided with, Lauren decided to also do her own research. Shortly after hearing the term HIE for the first time, Lauren discovered the Hope for HIE Facebook group. It truly was the biggest source of positivity thus far. Since Lauren and Henry had never met anyone in their circle of friends who had dealt with anything resembling their situation, it was comforting to find out that they were not actually alone. That they were not the only two parents in the world who knew what it was like to experience how life could completely change in an instant.
From the very beginning of the journey, their philosophy was that you don’t fight negativity with negativity…you fight negativity with positivity. Three weeks into the journey, when Eliana’s repeat MRI showed global, severe damage to both her white and gray matter, Lauren and Henry tried to find greatness in the midst of a situation that was not looking great. For instance, even though Eliana needed to have a G-tube placed, because she couldn’t suck or swallow, Lauren and Henry were grateful that she could breathe on her own. And, even though it became increasingly clear that Eliana’s outcomes were on the severe end of the spectrum, Lauren and Henry learned to evolve their definition of hope. In the beginning, Lauren and Henry held onto the hope that Eliana might meet all her milestones, since she was still a baby. But soon, as they came to accept that Eliana’s future wouldn’t look like that of a neurotypical child’s, hope shifted to having Eliana wake up next to them each morning, as comfortable as she could be. Even if Eliana’s quantity of life would not be large, Lauren and Henry would do everything in their power to maximize their baby girl’s quality of life.
The first two years of Eliana’s life were the most challenging, because she really didn’t have any way of communicating. Instead, the main way she expressed whether or not she was sick was through a change in her breathing patterns. On top of that, Eliana had basically no way of regulating her internal body temperature, so during her four years of life, the primary goal, after keeping her suctioned, was keeping her warm.
Over the course of the first two years, Lauren and Henry uncovered new issues that Eliana had internally. Just by looking at Eliana, you could never tell that she required a staggering seventeen different specialists. Aside from the HIE event itself, Eliana’s list of subsequent diagnoses was overwhelmingly lengthy. She had cerebral palsy, issues with her kidneys and bladder, adrenal insufficiency, hearing impairment, visual impairment, and precocious puberty.
With all these medical complications and specialist appointments, Eliana needed care around-the-clock, so Lauren had no choice but to quit her job. And yet, it took one and a half years for Eliana to be approved for a program in Texas called the Medically Dependent Children’s Program (MDCP), which provides financial assistance and respite care for families of children requiring the level of full-time care offered at nursing facilities. Before then, Eliana did not have Medicaid. So, on top of all the stress related to her health, there was also the added burden of financial stress.
During this time, Lauren and Henry’s family and friends showed up for them in more ways than they could ever imagine. Friends and family were always willing to help out financially, whether by paying the bills for the month or buying the family groceries. There was even one family friend who became a personal financial backer of sorts for Eliana, donating money every month, which specifically went toward covering the costs of her medical needs. Lauren and Henry hope that, in the future, financial assistance programs will be expanded upon, for HIE families already have enough to worry about.
Lauren’s transition from life with a full-time career to becoming a full-time caregiver was overwhelming in its unfamiliarity. Well into her twenties, just when Lauren thought she was reaching some stability in her professional and personal life, she found herself in the position of needing to completely rediscover who she was in the context of this new world she’d been thrown into. But, again, Lauren’s primary focus was Eliana’s comfort. To Lauren, Eliana was her wonderful, resilient daughter—Eliana was Lauren’s whole world. Even though Eliana couldn’t hear or see, she knew the voice of her mother. When Lauren sang “You Are My Sunshine” to her daughter, she would put Eliana’s hand to her throat, so Eliana could feel the vibrations of Lauren’s voice.
As a father, Henry also faced his own unique challenges. Knowing that his time with Eliana was limited, he wanted to spend as much time with his daughter as he possibly could. The reality, however, was that he couldn’t be by Eliana’s side at home on workdays or throughout the entirety of her hospital stays.
Moreover, for the first two years of Eliana’s life, they didn’t yet have night nursing support, so Lauren and Henry split the night shifts, each only operating on four hours of sleep. It was hard not feeling completely drained after working all day, while barely sleeping at night. But, as tired as he felt, Henry always took time when he came home to pause thinking about all his other responsibilities, so he could spend quality time with Eliana. The highlight of his day was sitting down next to Eliana and reading her a book. Henry would tell fathers in similar situations that, yes, it’s definitely difficult to not be there all the time. But in the moments you do have with your child—even if it’s just lying on the couch with your child for ten minutes at the end of a busy work day—make sure to enjoy them as much as possible.
As amazing as these bonding moments were, Lauren and Henry learned that, without prioritizing their own mental well-being at times, they couldn’t be as engaged in parenting as Eliana deserved. Especially in those first two years, when they had no night nursing, Lauren put herself on the back burner quite a bit. In those days, self-care really was as simple as Lauren making sure she had dinner at dinner time, or making sure she took a warm shower. Henry would jokingly tell Lauren that Eliana had consumed her without her even realizing it. And though Lauren had good reason to immerse herself in Eliana’s care, Henry also encouraged them to take much-needed breaks from the confines of the household. With Henry pushing Lauren and Eliana out of their comfort zones, the family was able to form memories together, such as paddleboarding on a vacation at a nearby lake. Even if Eliana couldn’t fully appreciate the beautiful scenery, or the feel of the water, these moments are ones that Henry and Lauren will forever cherish.
Once Lauren and Henry finally had a good sense of the extent of Eliana’s problems during those two first years, they began having discussions about growing their family. Lauren found out she was pregnant with Harper right after her first Hope for HIE mom’s retreat, which was certainly a cool surprise. The ins and outs of being pregnant while having a severely disabled child were very challenging. Eliana still had frequent hospitalizations, anywhere from one to five times per month. When Lauren was seven months pregnant with Harper, another curveball was thrown their way—Eliana developed acute respiratory distress syndrome (ARDS), which essentially meant that her lungs were failing. Adults often don’t make it through ARDS alive, let alone babies. Thus, as Lauren and Henry were preparing to welcome a new life into this world, they were simultaneously preparing to say goodbye to their firstborn. Eliana, with her inexplicable resilience, somehow managed to overcome ARDS. But the trauma and concomitant mental anguish of that situation made Lauren realize she needed to take a step back personally. She was terrified that, if she continued to experience stress of such magnitude, she was at serious risk of having a miscarriage.
Around the same time as the battle with ARDS, Hurricane Harvey hit, just as the family was in the process of closing on a new house. Despite all the chaos going on around her, Lauren knew her number one duty was trying to maintain some semblance of a healthy mental state. Taking care of Eliana 24/7 had been all Lauren had known since becoming a mother. Accepting the realization that she couldn’t continue living this way meant fighting against all her natural instincts. Instead of being utterly consumed by caring for Eliana, Lauren began nourishing herself and her body, which was now responsible for carrying another human life. Mentally, this shift in focus came with a tremendous amount of guilt. She felt guilty for being excited for a neurotypical child, scared that she would pay more attention to the new baby because of all the “firsts” her second child have that Eliana hadn’t. On the flip side, she felt guilty that she would continue to immerse herself so much in Eliana’s care that the new baby would be neglected. There was a constant battle inside Lauren’s head, and she was a nervous wreck, wondering what the family dynamics would look like once Eliana wasn’t an only child anymore.
In spite of all the adversity Lauren encountered during her pregnancy, adding Harper to the family was, by far, the best decision Lauren and Henry ever made. After not witnessing those milestones with Eliana, Lauren and Henry were able to appreciate how truly amazing it was that Harper learned how to crawl, walk, and say her first words. They took nothing for granted. The sisters only had two short years together, but seeing the way Harper interacted with Eliana was everything. Lauren will forever cherish those mornings when she would put cartoons on for the girls, watching how sweetly they cuddled next to each other. Harper was the best little assistant, helping Lauren give Eliana her medications or do chest physiotherapy (CPT) on Eliana’s back. Harper invented her own creative ways to engage Eliana in interactive play, too, such as picking up Eliana’s hand and having her press buttons on a play phone. Harper didn’t define Eliana in terms of her disabilities or differences—she just knew Eliana as her big sister.
It was so healing for Lauren and Henry to witness the way Harper appreciated Eliana as a human being, instead of looking down on her with pity as so many others had. The few times Lauren and Henry took Eliana out in public, people stared at Eliana and her feeding pump, too scared to approach them or ask the questions they so clearly had. It’s not okay that children are judged for their differences, for, if you boil down to it, we really are all different.
Lauren and Henry don’t know how much Harper will remember from these two years as she grows older. But they hope the memory of Eliana will leave some meaningful mark on Harper, reminding her that people with disabilities are beautiful and worthy too. They hope Harper will always remember that, just because some people can’t do all the things she can, that doesn’t make them bad or diseased people. It’s one of the reasons, even in the wake of Eliana’s death, Lauren continues to remain so active in the Hope for HIE community—so that, as Harper grows older, she, too, can bear witness to the fact that those with disabilities are whole human beings.
As Eliana grew older, it was becoming visibly more painful for her to deal with all her health complications. Her spine became more and more crooked, breathing more taxing, and it became increasingly difficult for Lauren and Henry to lift her and move her about. From the get-go, Lauren and Henry knew they weren’t going to have Eliana for very long—that was the sad reality of Eliana’s severe outcomes. As parents, it felt impossible to continue to live a normal life, knowing very well that their daughter was going to pass away. But Lauren and Henry just tried to remain focused on the present, enjoying whatever time they had left with their strong girl. They consider themselves fortunate for finding out that Eliana was imminently approaching death in the way that they did. Unlike many families, they had time to say goodbye.
About a week before Eliana passed away, she went to the hospital for what everyone thought was just a routine illness. It turned out that Eliana had agonal breathing, a classic sign that a person is nearing death.
After a heart wrenching, unimaginably agonizing week, Lauren and Henry made the decision to transition Eliana to comfort care. This decision wasn’t easy, and Lauren kept telling her sister she felt like she was giving up on Eliana, like she was killing her. But Lauren’s sister turned to her and replied with words that Lauren will never forget: “No. You have been the one keeping her alive each and every day for the past four years. Had you not intervened when she was born, she would not be here today.”
What helped Lauren and Henry accept this decision was reframing it from them “withdrawing care” to them showing Eliana just how much they did care by not forcing Eliana to fight, when she just clearly was too tired to keep fighting..
Since Eliana’s passing, a few families have reached out to Lauren as a loss mom, asking her how she and Henry made this decision. What she tells them is that, in your heart, you’re going to know it’s your child’s time, because your child is going to let you know. In a sense, it wasn’t so much Lauren and Henry making a decision themselves, but them respecting the decision that Eliana wanted to make.
Right before Eliana passed away, on January 11, 2020, Lauren and Henry made the promise to Eliana that they were going to continue to live. Lauren knew Eliana wouldn’t have wanted her to spend her entire life being a recluse, feeling guilty for trying to form new, happy memories. Except for the occasional outing or family vacation, Harper’s entire life, until that point, had basically been spent inside the household. But, only three days after Eliana’s death, Lauren, Henry, and Harper were at a farm, petting horses. For them, personally, what was important was upholding the promise they made to Eliana and being there to show Harper the beauty and wonder of life. Into their thirties, Lauren and Henry still don’t understand death—and that is coming from parents who have lost a child. But they would stress to other loss families that it’s okay to keep living and that there is truly no one-size-fits-all way to grieve.
Just as Lauren and Henry began exploring the world with Harper more, everything essentially shut down due to the pandemic. In many ways, lockdown made the grieving process more difficult. Lauren was still living the same life of not really interacting with people or venturing outside of the household, but now it was worse. Now, she didn’t have her wonderful firstborn constantly by her side. It was as if there was no escape from the emptiness.
During this time, Lauren did find some relief through the very real connections she made from the HIE community, receiving support from mothers who understood the all-encompassing pain of losing a child. Lauren and Henry also heavily leaned on one another through their grief. In the hotel room, right after Eliana was born, Henry had grabbed Lauren’s hand, telling her, “There is no more me or you, my family or your family. There’s only us and our family. If we break down, let’s break down together.”
Ever since then, they have worked as a team, despite not always seeing eye-to-eye. After Eliana’s death, they continued to remain a united front, by checking in on one another regularly, while accepting that it was okay if their expressions of grief didn’t look identical. Even if it was as simple as buying flowers for Lauren on the way home for work, or rubbing her shoulders at the end of a long day, Henry showed Lauren that he was still there for her.
In April, three months after Eliana’s death, Lauren and Henry found out that Lauren was pregnant with Olivier. Olivier’s due date was for January 3, 2021, a week before Eliana’s one-year Angel Anniversary. In a sense, it felt like this was Eliana’s way of watching over the family, of sending them something they didn’t even know they needed at the time.
When Olivier was finally born, it was bizarre how much he looked and acted like Eliana. Witnessing how precious the sister-sister interactions had been between Eliana and Harper, Lauren and Henry are excited to see the bond that Olivier and Harper forge in the coming years. Lauren has noticed that a common question among HIE parents of severely affected children is if they should bring other children into the picture. To this, Lauren would answer that, if you wanted multiple children before you had your HIE child, you need to go ahead and fulfill your vision. Don’t let HIE stop you. Although Lauren and Henry struggled with doubt, in the end, witnessing the special relationship between Harper and Eliana brought unparalleled lightness into their lives. Even now, Harper still remembers and talks to her older sister all the time.
It’s now been one and a half years since Eliana’s death. For a long time, Lauren and Henry didn’t think they would ever be able to talk about Eliana with a smile on their faces. But here they are, every day, trying to fulfill the promise of continuing to live to the best of their abilities. That doesn’t mean there aren’t still moments when they crater. There are times where it seems like, the longer Eliana has been gone, the harder it gets, for that just means more time has passed since they were last able to hold their resilient girl. But, on the dark days, Lauren and Henry remember how great of a gift it was just to say they were Eliana’s parents. To let the pride of having created a tiny human, who continued to fight in the face of so much adversity, sink in. Lauren likes to reframe everything that happened as her having been given the opportunity to spend two “bonus years” with Eliana—according to science, the ARDS really should have taken Eliana’s life. And Henry finds hope in knowing that, even in her death, Eliana’s presence will continue to positively touch the lives of others. Through it all, both Lauren and Henry will always try to find that hidden greatness in situations that aren’t necessarily great. They will continue to fight the negativity, not with negativity, but with positivity.
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