Name: Katherine and Patrick Schaufele
Location: Maryland, United States
Child's Birth Year: 2018
Keywords: HIE Dad, Loss Parent, Pregnancy after HIE, Seizures/Epilepsy, Cerebral Palsy, PTSD & Mental Health
Katherine and Patrick were just twenty-one years old when they had their first child, August. Neither of them had had the easiest childhood. Yet, instead of this adversity serving as a barrier, Katherine and Patrick are stronger people and parents for it. Because they were forced to find resources for themselves as kids, they were good at finding the best resources for August. Since childhood, Katherine and Patrick had learned how to adapt to their environments and grow from the struggle, a theme that underlies their HIE journey with August.
Katherine had a fairly normal pregnancy for the most part. On March 2, 2018, at thirty-seven weeks pregnant, however, Katherine knew that something was definitely wrong. She felt shooting pains, which became progressively worse as the day went on, and, after checking into the hospital, she found out that her placenta had torn from her uterine wall.
After receiving an ultrasound that showed August’s heart rate was extremely low, Katherine was immediately rushed to the OR for an emergency C-section. After delivery, August was deprived of oxygen for ten minutes and had an Apgar score of 0. After thirty minutes, his score increased to 1, which was still far below the minimum healthy score of 7.
August was intubated, loaded with phenobarbital to help manage his seizures, and transferred to a higher-level NICU that could better handle his health complications. Since Katherine had to recover from her C-section, she wasn’t able to see August until three days later. During that time, she felt completely in the dark about the severity of August’s injury.
In the meantime, Patrick was alone in the NICU, having no clue how to deal with a neurotypical baby, let alone a medically complex baby. In the days leading up to the MRI, August underwent various treatments, such as cooling therapy, received total parenteral nutrition (TPN), or “baby Gatorade,” since he was too weak to receive feedings by mouth, and ended up being put on an additional anticonvulsant medication called fosphenytoin.
A day prior to August being extubated, it was time for the much-anticipated MRI. The MRI showed severe damage to the brainstem and the center of August’s brain. For the most part, his right and left lobes were untouched. In the midst of being thrown into their overwhelming, and unanticipated, roles as HIE parents, Katherine and Patrick were grateful for August’s neurologist. He truly was a great communicator, and, in delivering difficult news, he left room for hope without sugarcoating anything. When being honest with Katherine and Patrick about prognostic uncertainty, his delivery was kind and gentle. But what they appreciated most of all was that, even though the situation was dire, he was able to lift some of the heaviness by being lighthearted. Of course, he was serious when he needed to be, but he didn’t treat Katherine or Patrick as if they were living a solely tragic life. His jokes, humor, and wit helped distract them from the scary world of HIE. Katherine’s biggest piece of advice for clinicians interacting with HIE families, especially with pediatric patients, don’t be afraid to be fun. Families don’t need constant reminders of how complicated life is—they already know that.
Despite complications along the way, such as developing a small hole in his left lung, August was eventually discharged from the NICU after fifty-three days. On top of the stress of August’s condition, the day he was supposed to be discharged, Katherine’s mom informed her that they could no longer stay in her house. Used to dealing with unexpected circumstances, Katherine and Patrick managed to find an apartment in just four days.
After discharge, they continued to face their share of obstacles with August’s health. At four months and five months old, August was diagnosed with sleep apnea and infantile spasms respectively. August was initially given prednisolone to manage the infantile spasms, but it was not working effectively, so he was switched over to adrenocorticotropic hormone (ACTH) injections in October 2018. One month into the treatment, August was hospitalized for almost three weeks due to developing Cushing syndrome, a potential complication of ACTH that arises when the body has too much cortisol in the blood for prolonged periods of time.
Shortly after that, August’s stomach stopped accepting food. By February 2019, he was given a GJ-tube, which Katherine and Patrick were told August would need to use for the rest of his life. Additionally, August was hospitalized nearly monthly for either a cold or seizures. Because of all these issues, Katherine and Patrick made the difficult decision, in June 2019, to enroll August in hospice care. After another year of additional diagnoses, such as cortical visual impairment and sensorineural hearing loss, as well as starting home oxygen therapy, August passed away on May 18, 2020, from suspected sudden unexpected death in epilepsy (SUDEP).
Although August’s life may have been short, and filled with hospitalizations, there were also so many moments of hope and joy. He permanently touched the lives of his family, and so many others, for the better. It’s amazing, really, how a small child can leave such a big mark on those who knew and loved him. Katherine and Patrick are better people because of those two difficult, yet beautiful, years with August.
Katherine learned that you can’t always control what comes next and that, sometimes, uncertainty is inevitable. In addition, August helped Katherine and Patrick become more tactful and patient. Because of him, they learned how to stay levelheaded instead of instantly “running their mouths” when doctors or nurses did something to upset them.
Before August, Katherine and Patrick had never really come into contact with a child with a developmental disability. Now, they are not only comfortable interacting with children with disabilities, but they actively promote accessibility so the world can be a more inclusive place. For instance, at the carnival where Patrick works, he makes sure children with disabilities get to experience the fun just like everybody else. If he sees children with disabilities, he is quick to pull them up to the front of the line—they fight every day, so they deserve people who will advocate for them as well. Since August had a variation of deaf-blindness, Katherine began to learn Pro-Tactile ASL, a form of sign language rooted in touch. Now, one of her goals is to spread awareness about this cutting-edge language, since it is largely unknown among the general population. Hopefully, through increased attention drawn to Pro-Tactile ASL, linguistic barriers can be removed for those who are deaf-blind.
August also taught Katherine what hope truly is. Something her father told her was to “hope for the best, but prepare for the worst.” During her experience with HIE, Katherine, of course, hoped August would meet developmental milestones. However, she mentally prepared herself by acknowledging that, even if he wasn’t one of those “miracle cases” who “beat the odds,” he was still August—different from most, but unbelievably great. If all her hope had been rooted in August achieving the best outcome possible, she would have given up a few months in. Instead, Katherine focused on appreciating August for where he was, not where she envisioned he could be. She focused on appreciating August for what he could do, not what he had yet to accomplish. While he couldn’t talk, he could tell others exactly how he felt through grunts, moans, and body position. While he couldn’t, he loved the LED lights that hung above his bed. Perhaps his remarkable ability to adapt to his circumstances and find new ways of living was passed down to him by his parents.
Similarly, Patrick’s hope wasn’t necessarily defined by outcome, but by the impact he saw August make on those he interacted with. Patrick found hope in the way the nurses’ faces lit up whenever they were around August. They often told Patrick and Katherine they had fallen in love with August and wanted to take him home—how many other people could bring such joy into this world without even being able to speak?
Throughout their journey, Katherine and Patrick were grateful for various resources they found and the support they received. Because Katherine was so young when she had August, many of her friends disappeared, but the true friends who stuck around for her came through ten-fold. Her best friend to this day was known by the hospital staff as Katherine’s “wife” since she was always present by Katherine’s side, through the highs and the lows. Katherine and Patrick were also grateful that they had each other through all of this.
Hope for HIE, which they found early on by searching for HIE support groups on Facebook, was also extremely helpful to them, for it was a place they could turn to for a repository of information about HIE. Other resources they found extremely helpful in navigating the complexities and tribulations of the medical world included the Maryland Infants and Toddlers Program, the Rare and Expensive Case Management (REM) program, the Casey Cares Foundation, TinySuperheroes, and Beads of Courage.
The Infants and Toddlers program provides early intervention services for children with developmental delays or disabilities. The REM program helped Katherine and Patrick navigate the Medicaid process, by giving them a case manager who did the heavy paperwork.
Katherine and Patrick also hope that all families can find an organization as great as Casey Cares. The foundation focuses on uplifting the spirits of critically ill children and their families through fun programming events, such as outings to sports games and birthday blast celebrations. Through sponsoring August and his family to attend places in their local area, such as the zoo and football games, the Casey Cares Foundation helped distract them from the medical side of things. In one of their last trips together, the family went to the Ripley’s Believe It or Not! Museum. A local news station interviewed families about the Casey Cares Foundation at the event, so August’s story was able to be shared on TV. This is a moment that Patrick and Katherine will never forget, as they were able to relay August’s wonderfulness to the world.
Another precious memory Patrick holds near and dear to his heart is when the “Colorado Captain,” a man who dresses up like Captain America to spread positivity to sick children, visited August. This was particularly special, since Patrick referred to August as “Captain A.” Not only is Captain America one of Patrick’s favorite superheroes of all time, but the fact that August had to endure a cooling process was reminiscent of how Captain America was frozen in ice for sixty-six years.
Furthermore, joining programs like TinySuperheroes and Beads of Courage helped Patrick and Katherine maintain hope as a family. TinySuperheroes makes capes for children with disabilities, and their families, with the mission to reveal the superpowers behind every difference. Through TinySuperheroes’ Patches Program, Katherine and Patrick helped August complete his “monthly missions”—whether it was creating and hanging up posters with inspirational quotes, or painting and hiding “kindness rocks” for others to find—so he could receive a new patch to be added to his cape. Through the Beads of Courage program, Katherine and Patrick had a tangible symbol of August’s resilience and all the obstacles he overcame. August received different beads to add to his ever-growing necklace each time he persevered through another procedure or another doctor’s appointment.
Katherine and Patrick were able to access all these amazing resources because they didn’t let the fear of being judged for being “too young” stop them from advocating for their son. Being young parents in a medically complex world, Katherine and Patrick were prepared to get the side-eye from others, or not taken seriously by many clinicians. However, Katherine and Patrick realized that, as long as they continued to do everything in their power for August, instead of letting others silence them, they were capable regardless of others’ opinions. To all the fellow young parents out there, who may experience this same stigma, Katherine and Patrick want to let them know that their age does not detract from their worthiness or capabilities.
Katherine wishes to share with other HIE parents that your child is the conductor—the one driving the train. As parents, all you can do is help “coal the fire” that fuels the train. Although you cannot necessarily control the development or growth of your child, what you can do is provide him/her with the resources to reach his/her full potential, whatever that may look like.
Patrick would additionally emphasize to parents of children with more severe outcomes to not be afraid to utilize hospice. When August had his first respite care visit to hospice in October of 2019—a month before his sister, Scarlet, was born—Patrick was hesitant to accept the help of hospice. However, the hospice workers soon came to be some of Patrick’s favorite people. What he really appreciated was that the pediatric hospice services were family-centric, rather than merely patient-centric. As much as they helped with August’s pain and symptom management, the various hospice workers, such as the social workers, also addressed the psychosocial needs of Katherine and Patrick as well.
Katherine and Patrick’s story is not merely one of loss, but one of many gains. From this journey, and from August, they have gained community and a sense of purpose. They have gained qualities, such as patience, tact, and flexibility. They have gained the perspective that hope isn’t always linear, but that’s okay. Most of all, they have gained a newfound appreciation for life with all its unknowns. They are infinitely proud of just being able to say that they were August’s parents and that they will always be August’s parents.
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