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Name: Krystina and Tristan Bennett
Location: Florida, United States
Child’s Birth Year: 2020
Keywords: New to HIE, Navigating Sibling Relationships, HIE Dad, Supporting Your Partner
“Live as if you’ll die tomorrow, learn as if you’ll live forever.”
Krystina and Tristan have a seven-year-old daughter, Adriana, and a son, Quentin, who was born in 2020. Adriana’s birth was traumatic for first-time parents Krystina and Tristan. When Krystina went to the hospital to be induced, Adriana’s heartbeat couldn’t be located, so Krystina had to undergo an emergency C-section. The cord was wrapped around Adriana’s neck, but in the end, she came out fine—screaming and breathing on her own and full of life. Krystina and Tristan thought their most traumatic day was behind them, and then came the birth of Quentin.
Similar to her first delivery, Krystina had to go to the hospital for an induction because she was almost forty-two weeks pregnant. After she was induced, Krystina was in labor for thirty hours, but nothing seemed to be progressing. Quentin had heart decelerations, so the doctors made the call for an emergency C-section. When Quentin was finally born, he wasn’t breathing on his own, and he had almost no reflexes. It turns out he’d suffered an HIE event due to a placental abruption.
Immediately, he was whisked away, and a few hours later, he was transferred to a larger children’s hospital downtown to undergo cooling. Before the transfer, Krystina was only able to see her son for five minutes. She just wanted to cuddle with him and hold him in her arms, but she had to let him go on without her.
Krystina was determined to reunite with Quentin as soon as possible, so even though she’d just endured a C-section, she left the hospital within twenty-four hours. Because of the hospital rules and regulations in the midst of the pandemic, it felt like Krystina had to navigate an obstacle course, jumping through hoops just to see her baby boy. When she arrived at the children’s hospital, she was both physically drained from the surgery and emotionally in shambles. Before she could even see Quentin, she had to check in, get screened for COVID and have her temperature checked, and make the long walk to the NICU. There, she checked in again, went through the necessary handwashing procedures, sanitized her cell phone, and wrapped it in a Ziploc bag.
Throughout the process, Krystina kept her emotions bottled up, but once she finally saw Quentin hooked up to machines and wires, she broke down. Quentin looked as tiny and alone as she felt. While Krystina wanted a family member to always be by Quentin’s side, this wasn’t feasible during the pandemic. Only parents were allowed in the NICU, and Krystina soon realized she needed to take breaks for her own health and sanity. The fact that the doctors and nurses were so great put Krystina’s mind slightly at ease. She knew Quentin was in good hands, even if those hands weren’t always hers.
Fortunately, during the seventy-two-hour cooling process, Quentin didn’t experience any seizures, and when he finally had an MRI, it came back relatively clear. While he was cooling, the only thing Krystina could think to do as a parent to provide Quentin with comfort was to sing to him. As Quentin closed his eyes, Krystina sat by his side and sang “The sun’ll come out tomorrow” from the film, Annie. These lyrics soon became Krystina’s go-to mantra during the NICU days. Every day, she struggled with the physical barrier of being swollen from her C-section and having to waddle around in pain to get to the unit. The song reminded her that, while she might be suffering from discomfort and exhaustion today, tomorrow would be a little better. To this day, Quentin responds when he hears that song, and Adriana has come to love it too.
Krystina also believes in the power of prayer, so she coped by asking friends and family to pray for Quentin and by seeing the chaplain daily. On the other hand, Tristan’s method of coping looked far different. While Krystina felt more anxious when she wasn’t in the NICU, Tristan needed to process all that was happening from a distance. Tristan’s number one piece of advice to HIE parents, especially those who are new to the journey, would be to do what it takes to try to stay emotionally balanced. Tristan’s father had always told him the story of his own birth—Tristan was born with a hole in his heart and had to have open heart surgery a year later. Tristan’s father almost passed out in the hospital from the stress of not knowing whether Tristan would make it, and Tristan sees lots of parallels in their experiences. When Quentin was hooked up to all those wires, Tristan almost lost it. He knew that staying in the NICU for prolonged periods of time would be detrimental to his own mental health, so he gave himself grace to emotionally cope outside of the hospital setting in those initial days. Tristan would tell parents to be by their child’s side as much as possible, but not to beat themselves up if they need to step away to recuperate.
Because Krystina and Tristan coped differently while Quentin was in the NICU, it put a strain on their relationship. There were days where Krystina needed desperately to be with Quentin and to be present during rounds. However, those same days, the thought of even driving to the hospital was extremely overwhelming for Tristan. Despite the rough patches, Krystina and Tristan are proud that they stuck together through those first few months. What helped them retain that strength as a couple was acknowledging that both approaches to coping were valid. In the moments where Tristan couldn’t get out of bed, Krystina showed patience and empathy, realizing that Tristan temporarily needed space to deal with his grief. And when they were frustrated with one another, Krystina and Tristan were honest about how they felt. Keeping an open line of communication is key.
They also learned that open communication is essential, not only between them, but also between them and Adriana. When Krystina and Tristan were preoccupied with Quentin in the NICU days, Adriana’s young, super-fun aunties took care of her and kept her busy with entertaining activities. At first, Krystina didn’t show Adriana pictures of her little brother covered in wires, tubes, and EEG leads, because she didn’t want to inadvertently traumatize herr. However, Adriana was scared and sad about not being included, especially since she wasn’t able to visit the NICU due to COVID restrictions. Krystina eventually showed Adriana the picture she took of Quentin while he was cooling, realizing that all her worries were for naught—Adriana wasn’t scared at all, taking in the image in stride. Krystina reminds other HIE parents that hiding information from their other children can actually lead to added stress. Parents certainly don’t need to share all the graphic, gory details with young children, but even giving a broad overview, using gentle, understandable terms can help siblings feel included.
After discharge, Quentin went to physical and occupational therapy. At his appointments, the therapists soon said there was no need to come back unless he began to fall behind on the developmental trajectory. For a while, Krystina was content pretending like nothing had happened, and that, like his sister, the complications of Quentin’s birth would have no long-term effects. However, when Krystina took Quentin to his second outpatient rehabilitation appointment, the rehab specialists were concerned that there were early indicators of cerebral palsy. They worried about the tone in Quentin’s trunk muscles and the way Quentin’s feet were turning outward. This appointment was an eye-opener for Krystina, making her realize that Quentin wasn’t completely out of the woods. He was still at risk for developing disabilities down the line, and only time would tell.
When Quentin was around five months old, Krystina stumbled across the Hope for HIE Facebook page. For Krystina, what helps her cope the most has been informing herself by doing research so she feels prepared for whatever the future may hold. Videos with providers and researchers on Hope for HIE’s Medical Advisory Board have been invaluable to her, as she has not been able to find such in-depth perspectives from professionals anywhere else. Krystina also asks doctors any and all questions she has, no matter how silly they seem. Informed parents are empowered parents, and she cannot emphasize enough the importance of not being afraid to ask questions at family meetings or appointments if they don’t understand what is going on.
Now, Quentin is very social, and at daycare, he loves playing on the mats with the other babies. Quentin is definitely a mama’s boy, so half the time he is in a baby carrier on Krystina’s back. The other half of the time, he loves playing with his goofy older sister and their puppy. Even though Quentin may not be completely “out of the woods,” as Krystina previously anticipated, she remains hopeful and makes sure that Quentin has access to the best care possible. Krystina has moved past the “Oh my gosh, is Quentin going to be ‘normal’?” phase to the “Will Quentin have every advantage possible to cope with his new normal?” phase. The biggest thing that Quentin has taught her has been that there really is no singular definition of “normal.” There is just what is normal for each particular child. Right now, for Quentin, his normal looks like sitting up even earlier than many neurotypical children, but still not being able to push up on his hands like most children his age. Krystina knows that his normal will continue to evolve over time, but regardless of what it becomes, Quentin will be alright and will always be loved—no matter how affected he may be. He will find his own way to exist in this world. It is through Hope for HIE, and seeing some of the incredible things other babies do, even after extensive brain damage, that Krystina has learned to never underestimate the sheer resilience and adaptability of children.
In the end, if Krystina and Tristan could go back in time and not have their family endure all that trauma, of course they would. But they also acknowledge that, because of this experience, they love and appreciate each other and their children even more.
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