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Betsy’s Story: Finding Beauty in the Unexpected

April 30th, 2022  | HIElights of Hope

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Name: Betsy, Pilon

Location: Michigan, United States

Child’s Birth Year: 2012

Keywords: Board of Directors, Seizures/Epilepsy, Advocacy Work/Blogging, PTSD & Mental Health

“It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.”

-Theodore Roosevelt in “The Man in the Arena”

In 2012, Betsy could have never imagined her life today—life as an HIE mom, filled with uncertainty, chaos, and many, many curveballs. But, also, a life of great joy, hope, resilience, beauty, and human connection. The day her son, Max, was born, Betsy endured some of the scariest moments of her life. And yet, today, as she serves as the executive director at Hope for HIE, she has found that perspective is everything.

Betsy never suspected she’d run into complications when she became pregnant with her first child. Her pregnancy ran smoothly, she was receiving great prenatal care, and, as she was well into her third trimester, she found herself breathing a sigh of relief, knowing that prematurity wouldn’t be an issue.

However, a week before Max was born, Betsy began noticing a shift in his movement patterns. Thinking it was better to be safe than sorry, she went to her OB/GYN to get everything checked out. At the appointment, she was taught how to do kick counts to monitor Max’s movements but reassured that everything looked just fine. Although Max was a breech baby, meaning he was in a feet-first position, instead of the typical head-first position in the uterus, many babies are breech without a cause for major concern.

The first time Betsy seriously began to worry was the Sunday before Max’s birth. Instead of her belly feeling firm, it felt soft and flaccid, and she noticed that Max wasn’t kicking…or moving at all.

As a first-time mom, Betsy had no idea what to expect. She called the labor and delivery department, and her husband, Mike, packed a small bag and drove to the hospital to get things checked out, thinking they would be discharged shortly and told that everything was fine.

As with most HIE parents, they didn’t anticipate the host of complications that followed. During the biophysical profile, signs of distress included that Max’s heart rate wasn’t fluctuating. As she was prepped for an emergency C-section, Betsy had a panic attack, which caused adrenaline to shoot through Max as well. The anesthesiologist reassured her that he would likely not have to intubate her, allowing her to be awake for the delivery, as Max started to move more.

After the C-section, Max let out a little cry and was quickly rushed to be intubated by a neonatologist. Having no idea why Max wasn’t breathing, Betsy tried to hold onto the comfort of knowing her son was in good hands—she had actually worked in the health system at the community hospital where the delivery happened, so at least there was that faint hint of familiarity.

After Max was assessed by the neonatologist, it was determined he would be a good candidate for therapeutic cooling and thus needed to be transferred to the higher-level NICU downtown. Max was transferred, with Mike following close behind. Betsy’s parents arrived in the early morning hours and followed the ambulance that transferred Betsy to the downtown hospital, so she, too, could be closer to Max.

While Betsy recovered in a room close to the NICU, the next few days in the NICU came with a string of overwhelming events. From the doctors initially thinking they would lose Max and placing him on a high-frequency oscillator (an intensive breathing machine) to the cooling process where Max was given pain medications and strong anti-convulsants to help his body cope with the trauma of being cooled to 91℉ and to prevent seizures, Betsy and Mike learned just how touch and go this process would be. Luckily, Max began to do much better on the last day of cooling, shortly before the rewarming process began, and he was extubated as he began breathing on his own.

On the fifth day, the much-anticipated MRI day came. For many HIE families, this day can be really traumatic, because it seems like there is an endless supply of unknowns. Betsy had so many questions, she didn’t know where to begin. What was the root cause of all of this? Was all of this her fault? Would Max have any quality of life? How would they proceed forward?

At this point, Betsy had yet to hear about neurological concerns, so she really had no idea what to expect. Betsy vividly remembers the chaos of traveling to the MRI machine from the NICU. Transporting Max really took a whole village, but Betsy was fortunate to have such a supportive team at the hospital looking after her son. The MRI ended up going smoothly, and Max, luckily, had great continuity of care, which is rare in cases like his. The same neonatologist who was in the delivery room at the community hospital ended up being on service at the downtown NICU with Max and his parents for the entire first week. Having that source of stability in an otherwise turbulent time was truly a blessing.

The conversation discussing the results of the MRI with the neonatologist will forever be etched in Betsy’s memory. She remembers the details like it was yesterday, from the shirt he was wearing to his mannerisms. Time stood still, for Betsy and Mike finally received the confirmation that something really difficult had happened to Max. Max’s MRI showed moderate to severe injury in Max’s parietal, occipital, and frontal lobes, and they were told, as of that point, the prognosis was still uncertain. They would have to wait and see how Max did in the next few days, with introducing feeds and reacting to different medications. All the hopes, dreams, and visions Betsy had had for her future with Max were thrown in the air, and, once the neonatologist left the room, all the emotions she’d been holding back poured out. She and Mike both had a long, hard cry, grieving the confirmation of damage to Max’s brain, and the uncertainty of their hopes and dreams as a family ahead.

After that initial conversation, a neurologist talked to Betsy and Mike about more specifics, but, again, they were told that the range of potential outcomes following an HIE event is so wide that there was no way of knowing what exactly would happen. On one hand, Max was at risk for conditions such as cerebral palsy and intellectual disabilities. But he also said that the cooling intervention could have helped prevent more serious disability. He talked in depth about neuroplasticity and how Max’s brain was still growing, adapting, and rerouting. He also stressed that every kid’s injury and recovery process looks different, which paradoxically relieved and exacerbated Betsy’s stress. She felt hopeful in the ambiguity that anything, either way, was possible. But yet, she also felt anxious not knowing which way his journey would go.

In the conversations following the initial one with the neurologist, Mike and Betsy were flooded with a firehose of information. It was hard to process everything while simultaneously trying to cope with their new reality, but the neurologist was amazing at being available throughout the NICU stay to answer any questions they had.

As time moved forward, Max began to make progress with feeding, but his biggest challenge remained that he was still on oxygen. It was one of the night nurses—who had a bold personality—who said, “I’m going to get this kid off oxygen tonight.” And, just as the nurse had said, the next morning, Max was finally off the oxygen! It was interactions like these, with nurses who took the time to get to know Max as a unique baby instead of “just another patient,” that made the three-week stay in the NICU easier.

However, what Betsy yearned for most was beyond the psychosocial support that the NICU was able to provide to her…she felt out of place and alone in her journey, since, basically, every other child in the NICU was a preemie. Prior to discharge, Betsy asked the social worker if there were any families she could be connected with, who had been through a similar situation. Much to her dismay, she received a hard “no.” At the onset of a journey with infinite unknowns, Betsy had a burning desire for human connection, for validation from people who had gone through what she and her family had just endured. But, instead, all she received at discharge were two generic pamphlets about early intervention and a state-based insurance program.

A diagnosis of HIE was never given in the NICU. Betsy first heard of the term during one of the last days of rounds, when the rounding neonatologist brushed off her questions about what “encephalopathy” meant, just saying “it had something to do with the brain,” before he quickly moved on to another patient. Her sister-in-law, a pediatric physical therapist, helped connect the dots for her.

After discharge, there was a big chunk of time between being sent home and the next neurology appointment. It was overwhelming to transition from the NICU environment to a world with no nurses, monitors, or constant medical supervision. To seek out stories from families with children living across the wide spectrum of outcomes, Betsy turned to Google and Facebook, exactly what she had been warned not to do by the NICU staff.

 Betsy had so many unanswered questions, with the big ones being whether she would still be able to maintain a career, if her marriage could survive, if she would be able to have more children, and whether, whatever Max’s development might look like, life might be “okay.” Weeding through the search results, Betsy discovered the blogs of three different families. Two were from Australia, and one from the US. Each had a very different outcome with their children, and all had different definitions of being “okay.” The bloggers were able to answer her questions and offer reassurance in the process—each was still working, still married, and went on to have subsequent children. For the first time in a while, Betsy let out a genuine sigh of relief. Not only did they answer her questions, but they all directed her to a Facebook support group that, although she didn’t know it at the time, would go on to change her life—Hope for HIE.

At that time, in 2012, Hope for HIE was an intimate Facebook group of around 200 people from all over the world. It didn’t take Betsy long to get connected, begin to ask questions, and look at what other people’s lives were like with this unexpected diagnosis and wide range of outcomes, from unaffected through loss. When society as a whole tends to equate the NICU with prematurity, it felt empowering to know that there were others out there walking on this unique journey alongside her. After asking clinicians, searching the web, and weeks of feeling alone, Betsy had finally found her community. She found support and friendship, along with connections with people all over the world. People who came from every walk of life, had overcome so much adversity before and after HIE, and were just, amazingly, kind and compassionate people. One of the most helpful aspects of the group for Betsy was just gaining insight from parents on how best to prepare for all the various specialist appointments, because, often, it’s difficult to even know the right questions to ask. And although HIE is kind of like the “Wild West,” in that no two injuries and recoveries are the same, even the Wild West seems a little less wild and a little more navigable with a community of supporters along for the ride.

As solely a Facebook support group, Hope for HIE was already helping so many families all across the world. Betsy could only imagine how much of a positive change Hope for HIE could create for those in the HIE community if it became an actual structured nonprofit organization, as the group founders had intended.

In 2013, Betsy and a group of parents met to seriously consider how to turn Hope for HIE into a nonprofit. The first task would be having some sort of home base, where they could plant the flag on the ground. One of Betsy’s friends, who was an attorney, offered to work through all the paperwork of filing for a nonprofit pro bono. Before Betsy knew it, her hometown in Michigan became the planting grounds for the Hope for HIE flag. Suddenly, the community vision for Hope for HIE was coming to fruition, officially being recognized as a nonprofit in 2014. Today, Hope for HIE has expanded to a network of over 7,000 families, researchers, clinicians, and community members, worldwide. Betsy has since gone on to become the executive director of Hope for HIE, making it her full-time job. In the upcoming years, she really wants to home in on collaborating with the medical community and other members in the ecosystem of support to look at decreasing the incidence of HIE and improving the quality of life for children and families.

In the last few years, not only has Betsy watched Hope for HIE grow, but she has also watched Max grow into the vibrant, creative, sensitive person he is today. His journey may have been different from most of his peers, but different is not synonymous with bad, or less. The first couple of years after Max was discharged from the NICU were filled with early intervention therapy appointments, such as physical therapy and occupational therapy. He has spastic diplegic cerebral palsy and is more impacted below the waist and on the right side of his body, not fitting neatly into any singular diagnostic box. In addition, Max has inattentive ADHD, but is able to manage the conditions at school with the help of learning accommodations and learning strategies that keep him on task.

In 2020, the Betsy’s family experienced yet another curveball in their nonlinear journey—at the age of eight, Max was diagnosed with epilepsy. The diagnosis was a shock, as Max previously had not had a seizure, including at birth or in the NICU. In the early hours one morning, Betsy woke up to Max having a tonic-clonic seizure. In panic mode, she enacted seizure first aid—something she learned about through the Hope for HIE community—rolling Max over onto his side, making sure his airway was clear and that he wasn’t turning blue, and calling 911. She also made sure to videotape about ten seconds of the five-minute-long seizure, because she knew the neurologist would want to see it later on, in order to gain as much information as possible for an accurate diagnosis. Upon the arrival of the paramedics, Max seemed to be making a pretty quick recovery, and, within fifteen minutes of being loaded into the ambulance, he was already cracking jokes with the EMT.

Throughout this next “plot twist,” as a mom, Betsy was grateful for many things. Oftentimes, children have a difficult time after the initial seizure stops, so Betsy was grateful that Max was able to communicate again so soon after, which she found reassuring. In the ER, the physician was able to call the neurologist, who had been tracking Max’s development annually, to discuss a plan of care, and set up a telehealth appointment. Betsy was able to email the video for the neurologist to analyze, and she had several friends from the Hope for HIE community reach out to advise her on what to ask at the follow-up appointment to give her and Mike a greater peace of mind. They left the appointment with an overnight EEG scheduled (Max had not had one since the NICU), a prescription for a nasally administered rescue medication in case he had another seizure, and a prescription for a seizure monitor, since the type of seizure Max had could be picked up on such a device.

Having gone through this messy, yet beautiful, journey for over nine years now, Betsy has three key pieces of advice for HIE families who have to similarly cope with the uncertainty of not knowing what comes next. First, she cannot emphasize enough the value of peer-to-peer support. Sharing her story and hearing about the lived experiences of other HIE families was critical to building a support system of people who understand the trauma, uncertainty, and difficult times, all while celebrating connections, finding creative solutions, and acknowledging the immense value of each child, no matter how their HIE impacts them.

Second, Betsy advocates for mental health support to begin in the NICU and be continued after discharge. Mental health disorders, such as depression, anxiety, and PTSD, are common diagnoses among families who experience acute trauma, so therapy can help HIE parents and family members receive the treatment they need to manage any symptoms they may be experiencing.

When Max was around two and a half years old, Betsy’s PTSD symptoms came to a head at a work conference held at a local hospital. She had a panic attack and began to pass out after smelling soap that was used in the NICU. Starting to see a trauma-trained therapist and receiving Eye Movement Desensitization and Reprocessing (EMDR) therapy, a specialized treatment for PTSD, was a life-changer for her. After receiving help, she found she could better focus on the present moment and engage in day-to-day life with Max. As Betsy likes to say, “Babies can’t raise themselves.” To help a child reach his/her full potential, parents and caregivers need to prioritize their own health and well-being.

Her last piece of advice would be that, regardless of where your child falls on the spectrum of outcomes, connect with others in the community across the full variety of outcomes. There are many wonderful people to connect with, and each community member can learn from one another. The power of community can change things for the better with advocacy for a more accessible world, reducing the negative stigma surrounding disability, and increasing quality of life for all.

Through all the ups and downs, Betsy has moved forward embracing the constant redefining of “hope.” Hope is messy, it is beautiful, it is frustrating and relentless. From Max and his journey, she has learned so many invaluable lessons, one being that hope cannot be defined narrowly by an outcome but is a lens for how one may choose to look at life. Betsy knows that, no matter where Max’s journey takes him, they will continue to redefine what “okay” is, through that lens.