Name: Mark Schwartz
Location: Maryland, United States
Child’s Birth Year: 2015
Keywords: HIE Dad, Loss Parent, Seizures/Epilepsy, Cerebral Palsy, Twins, Self-Care
As a member of the air force for the past ten years, Mark had been used to a decent amount of change and fluctuation in his life. However, when he and his wife, Becky, had Elana and Leah in September 2015, he experienced change to a degree he never thought fathomable.
Mark and Becky had been dealing with fertility issues for a while, but they knew they had so much love to give. After trying basically every fertility treatment out there, they were overjoyed when Becky became pregnant with twin girls, Elana and Leah, with the help of in vitro fertilization (IVF). Most of Becky’s pregnancy was smooth sailing, a time marked by overwhelming excitement. However, the night of September 10th, thirty-four weeks into Becky’s pregnancy, everything changed. That night, Becky had an intense contraction, and she quickly went into a state of shock. She wasn’t able to support herself, so Mark carried her to the car—he remembers traveling those twenty feet from the front door to the car seeming like the longest distance ever.
Once they arrived at the hospital, the best word to describe the atmosphere was chaos. No one knew what was going on—not Mark, not Becky, not the physicians. When Becky was finally hooked up to an ultrasound, only one heartbeat was detected from the twins. The physicians immediately took Becky to the operating room, intubated her, and prepared her for an emergency C-section. Mark wasn’t allowed to accompany Becky into the operating room. It turns out that Becky had experienced a blood clot around her liver and a simultaneous placental abruption, which led to her losing over four units of blood internally and to the twins being deprived of essential blood and oxygen.
During the delivery process and actual birth, everything was extremely touch and go. Becky almost coded, it took Elana a few minutes to be resuscitated, and it took Leah over a half hour to be resuscitated.
The twins were wheeled to the NICU, and neurological tests showed that Leah had no brain function. These moments were the most terrifying of Mark’s life. On top of Becky’s survival still being up in the air, Mark was forced to make the impossibly difficult decision about whether or not to withdraw life-sustaining treatment for Leah. Ultimately, Leah had no chance of rebounding after brain death, so he decided to cease her medical care after Becky had the chance to meet her face-to-face. The four of them eventually spent a few bittersweet hours together as a family, and Mark was able to get his first and last picture of the twins laying side-by-side. To this day, Mark vividly remembers the sound of Leah gasping for her last breath as he and Becky held her together in their arms.
In those days after losing Leah, the whole world came crashing down, and it was difficult to be optimistic and keep pushing forward. Everyone did their best to support Mark and Becky—the doctors, nurses, their rabbi, friends, family, and coworkers—but maintaining hope in the aftermath of such immense loss seemed unattainable. Mark reminded himself that, even though Leah was no longer here, Elana was still here fighting, so he needed to continue fighting for her. In those NICU days, he essentially turned on “go mode” so he could serve as support for Elana, and for his wife, who was broken, both physically and emotionally.
After Elana’s birth, the physicians didn’t know what to do with her, and she was too premature to qualify for cooling. Her MRI showed global, severe damage in all parts of her brain, and she spent a total of eight weeks in the NICU. During that time in the NICU, Mark and Becky learned all they could about HIE, stumbling upon the Hope for HIE group on Facebook. Back in 2015, Hope for HIE certainly included a smaller network of families and was a different organization than it is today. As the years have passed, Mark remains grateful for the Hope for HIE community and continues to be amazed at how much the group has evolved to the amazing information and support hub it is today.
Now, Elana has various complications born out of the HIE event—she has cortical visual impairment, Lennox-Gastuat epilepsy, quadriplegic cerebral palsy, is nonverbal and nonmobile, is G-tube fed, and requires around-the-clock medical care. However, Elana is so much more than a list of diagnoses or all the things she cannot do. She is, most importantly, a wonderful, vibrant, unbelievably resilient, and happy little girl.
There is a narrative that runs deep in our society that paints life in a wheelchair, or life with a child with different needs, as one to be pitied. In Mark’s experience, this could not be further from the truth. Of course, there are many difficult times, but his and his family’s lives are also suffused with so many moments of pure hope and joy. Among Mark’s fondest memories are traveling with Elana and his family to countries such as Israel, Iceland, and Denmark, not letting Elana’s diagnoses stop them from enjoying life and exploring the world. Elana loves rough play and bumpy stroller rides, and Mark finds hope in seeing Elana’s face light up as he pushes her stroller across textured sidewalks made of brick and cobblestone. Elana loves boisterous events and being social, and, at circle time in school, when all the kids are hooting and hollering, she always wants to be at the center of the excitement.
Moreover, since their daughter Louisa’s birth in late February 2020, it has been a joy to witness the sibling bond grow between Elana and Louisa. Louisa is just beginning to enter the toddler stage, and she has already picked up on cues to how Elana is different and is sensitive to her older sister’s needs. When Mark witnesses Louisa bringing toys to where Elana is laying, so Elana can be included in playtime, his heart simply melts. He is excited to see how their sister bond continues to grow over the years. It is this joy and love, that is shared amongst the four of them inside their home, that fuels his hope.
This journey comes with its unique challenges for HIE dads, especially given cultural expectations and stereotypes that men are “supposed to” provide for and protect their families, all while appearing calm and collected on the outside. In the days after Becky’s traumatic birth experience with the twins, Mark felt so angry with himself for “failing” to uphold his duty to protect his family. Even to this day, he still struggles with the “what-ifs.” What if he had reacted faster in making the decision to rush Becky to the hospital? What if he had driven faster to the hospital? What if he made the wrong decisions for his kids when they were in the NICU? It is in these moments, when his thoughts spiral into statement after statement of self-blame, that Mark tries to remind himself of all that he has to be proud of. He takes pride in not only providing the physical and logistical support to his family but being a constant source of emotional support as well. He would advise any HIE dad experiencing similar struggles to actively work on loving themselves again, holding their heads up high, and giving themselves more credit for all they do.
Furthermore, what helped Mark greatly was having the mindset that he may be “playing hurt,” but he is still playing. Growing up as an athlete, he likes to use sports analogies. Playing hurt refers to, for instance, a basketball player who tears his ACL, then comes back to the game and learns how to play differently, because his knee is not the same as before. Mark has learned to adapt to his unexpected reality and continue to live, in spite of the grief. When Elana has rough days, or when Mark feels overwhelmed as a father, he reminds himself that, as long as Elana fights, he, too, will continue to fight. He tells Elana that, for however long she is going to and wants to be here, he will be here for her.
Elana has taught Mark what true strength and determination is, and he has really learned that, when people are stressed, or inevitably encounter challenges in life, everything is relative. He hopes that other parents, too, can realize that, with adjustments, continuing to live life (“play”) after an unanticipated setback (“injury”) is possible. And once you begin to adjust your life and your mindset, you will find that happiness and joy, even if it may not be what you previously anticipated.
In the future, Mark aims to spread awareness about HIE and disability rights through sharing his story. He hopes that, by going out and about on adventures with Elana, he can show the world that life with disability is far from a death sentence. For any family who thinks that medical equipment means they must remain tied to the house, Mark hopes to let them know that Elana hasn’t slowed his family down from exploring the corners of the world, from taking time to be outdoors, or from enjoying the exciting chaos that characterizes childhood. He often says that “Elana can do everything other children can do; she just needs help or to do it differently.” While she may not be able to run a 5K in the traditional sense, she participates in the Hope for HIE 5K every year with the help of Mark taking her on those speedy, bumpy stroller rides that she enjoys so much. And, each year, the running joke is that Elana beats Mark in the race, crossing the finish line before him!
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