Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy


Ashley’s Story: Being Gavin’s Mommy, Not His Therapist

April 30th, 2022  | HIElights of Hope

Ashley Fielding is affiliated with Hope for HIE, both as a provider on the medical advisory board and as an HIE mom herself. She has been a pediatric physical therapist (PT) for ten years. She was drawn to this field for the variety of settings she was able to work in—from the early intervention setting to the school setting—and for the fact that she was able to follow children longitudinally, from birth until twenty-two years of age. By serving patients for long periods of time, Ashley has the privilege of building meaningful relationships with the children and their families. To see the resiliency that families show throughout the years is amazing, but Ashley herself never imagined she’d be placed in a similar position where she needed to show such strength. And, then, seven years ago, came the birth of her first child, Gavin.

Ashley’s pregnancy went well, and her labor seemed to be progressing; however, after many hours of pushing, Ashley was taken to the operating room for an emergency C-section. By the time Ashley woke up after surgery, Gavin had already been whisked away to the NICU. It turns out that, when Gavin finally came out, he wasn’t breathing and had alarmingly low Apgar scores. Perhaps the hardest part about all of this was that it was so unexpected and inexplicable. Ashley’s fears had never ventured in the direction of something going wrong with Gavin’s health, as, even during labor, there were no indications of something being wrong. Instead, the cause of Gavin’s HIE largely remained a mystery.

When Ashley arrived in the recovery room and was handed the paperwork for therapeutic cooling, she was still not completely clear-minded, as she was exhausted from the intensity and length of the labor and emergency C-section. It wasn’t until the next day that the gravity of everything that had happened truly hit her. Although Ashley had historically been more of the optimist, while her husband was more of a realist, they completely switched roles in the initial days in the NICU. Her husband tried to tell her they shouldn’t worry unless there was more concrete news. But, because of the nature of her work as a pediatric PT, and because she had worked with many HIE clients with severe outcomes, Ashley immediately began thinking of the worst-case scenarios in her mind. She was in a place brimming with overwhelming darkness. Nurses attempted to console Ashley by letting her know that she was the best mother Gavin could possibly have, given that she knew what to look for and what to work on. But, whenever she received those well-intentioned comments, all she could think was, “I don’t want to be his therapist! I just want to be his mommy.” In those moments, being a pediatric PT often felt more like a curse than a strength she could draw from. In many ways, it stripped Ashley of her ability to derive hope from the naivete of not knowing the potential realities of life with HIE.

The three weeks in the NICU were some of the hardest of Ashley’s life. The first two weeks, in particular, were terrifying, as she witnessed her baby boy intubated, going through multiple blood transfusions, and having suspected seizures. As Gavin was being rewarmed after cooling, Ashley was anxious to find out whether his decreased EEG activity was due to the heavy medications he was on to keep him comfortable or whether it was due to HIE. Luckily, once Gavin came off the medications, he began to wake up and things started to look more optimistic. But, then, the day Ashley and her husband received Gavin’s MRI results confirming HIE, she felt devastated. Up until then, there remained a tiny inkling of hope inside of her, as she held onto the notion that, perhaps the entire time, the doctors were just being overcautious and that her baby boy was actually okay.

Thankfully, Gavin’s neurologist was amazing—not only did he call right away to let Ashley and her husband know the results, but he emphasized hope and possibility due to neuroplasticity. He reminded Ashley of all she had learned in her PT schooling about the brain’s remarkable ability to reroute in the wake of injury. As Gavin was having issues with his suck and swallow, the remaining portion of the NICU stay was concentrated on finding a feeding plan that allowed him to safely eat orally without the need for an NG-tube. When Gavin was finally able to safely drink the necessary amount of pumped milk, he was discharged home.

The first few weeks at home went as well as they could have given the circumstances. But once Ashley’s husband went back to work, and it was just her alone in the house with Gavin all day, Ashley hit another rough patch. The long-standing anxiety and panic attacks she had struggled with for years were only exacerbated in the aftermath of all the trauma. It felt suffocating to not have anyone to distract her from her worry-filled thoughts. During this time, Ashley realized that, even though Gavin was born at the end of the summer, she hadn’t been opening the curtains to let sunlight into their home and had not been outside much. She began opening the curtains and filling their home with sunlight each morning, as well as taking walks outside with Gavin. Being outside, getting fresh air, and soaking in some much-needed vitamin D made a huge difference for Ashley.

Ashley would tell parents that even seemingly small changes to their daily routines can make a big impact on their mental well-being. Instead of feeling trapped inside in the darkness all day, find ways to appreciate the beauty of the world. On top of soaking in some much-needed vitamin D, the other thing that helped bring Ashley out of her constant worry was beginning to witness Gavin’s inchstones. It wasn’t so much those typical, big milestones of crawling or walking that Ashley focused on, but all the tiny ways Gavin began to emotionally bond and connect with her more. The joy Ashley felt when Gavin began responding to her voice, tracking her movements, and smiling back at her was insurmountable. She slowly began to feel like she was growing into the role of a mother, instead of the role of a provider continually looking out for “red flags.”

From there, Gavin made slow and steady progress. He did spend some time in feeding and speech therapy as a toddler, and Ashley did a lot of play-based physical therapy on her own with him. As Gavin grew older, Ashley put him in activities, such as gymnastics and karate, where he could work on his balance and coordination while also having fun childhood experiences. Although there were bumps in the road, such as discovering Gavin had sleep apnea at six months old, Ashley is so grateful that it resolved over time. Now, at seven, Gavin is a happy, amazing, healthy kid. He is no longer in speech therapy, and his last sleep study was normal. Ashley will always have worries and what-ifs about the future but has tried her best to stay in the moment and focus on the positive things. Had Gavin’s outcome been different, Ashley feels she likely would have needed to transition to working with a different population, such as adults, for her own mental health. But, every day, she remains thankful that she has been able to continue in the field of pediatric PT, as being there for families has helped her create purpose from her pain.

Ashley went back to work when Gavin was five months old. During that transition, Ashley wondered whether she would be able to support parents dealing with heavy things, when she was so worried about her own child. But, as she began interacting with families, Ashley realized that, just because she endured trauma, that didn’t mean she was completely broken, too fragile to be competent in her profession. In fact, it was because she knew what it was like to experience that immense grief and fear over future uncertainty that she could empathize with parents on a deeper level. Ashley had known that she’d be a different therapist after becoming a mother anyway. But after becoming an HIE mother, her eyes have opened to what families are truly living through on a daily basis. Before, she could feel for families as a therapist. Now, she connects with families as a friend, as an ally who is walking with them down a similar path. When Ashley shares her story with families she feels comfortable with, she can sense that they are able to trust her on a deeper level.

In addition, as Gavin’s mother, Ashley gained a greater appreciation for the incremental signs of progress, as opposed to just those huge developmental milestones. This appreciation translated over to her outlook as a therapist. She is now better able to help families notice and find joy in the little things…the subtle, yet meaningful, victories. She now looks at what is important for her patients and families in a different light. If it’s important to a parent that their child can simply sit through a thirty-minute car ride without crying due to discomfort, then that’s what is going to be important to Ashley. It’s not just about whether a child can crawl, walk, or do XYZ. It’s about what is meaningful to each individual family. Of course, it’s Ashley’s job to help children work on reaching their developmental milestones. But, at the same time, her job is so much more than just that. If what a parent really needs on a rough day is someone to express their grief to, then Ashley will be that person.

Ashley would emphasize to other providers interacting with HIE families how important it is to not only listen to parents, but to listen with empathy instead of judgment. Families often simply need a provider they can talk things through with, who will make them feel heard, and who will let them know that they are a huge part of their child’s team. Show sensitivity to the decisions parents make for their children and walk alongside them in their journey, realizing that many of them may still be grieving. Ultimately, what humans often seek is connection—do your best to fulfill this need by meeting parents where they’re at in this process.

Ashley is forever grateful to have found that human connection during such a lonely time, through the Hope for HIE community. Right around the time she went back to work, Ashley met an HIE mom who happened to only live a couple miles away from her through the Hope for HIE California subgroup. When she first saw the mother’s Facebook profile, Ashley was flooded with a sense of déjà vu. It turned out that she and Ashley were in the same labor and delivery class and that they overlapped in the NICU. To this day, their families remain super close to one another, and they like to think of their friendship as the silver lining to two really horrible situations. It was after forging this initial connection that Ashley became more involved with Hope for HIE, recognizing the power of parent-to-parent support. The next year, Ashley and her local HIE mom friend went on the mom retreat together, and it was one of the most amazing trips of Ashley’s life. Subsequently, Ashley became a moderator for some of the Hope for HIE Facebook groups and, eventually, joined the board of directors in a more formal capacity.

Soon after, when Ashley found out she was pregnant with her second child, all of the worries and PTSD came flooding back. It became triggering for her to see new families constantly joining the groups and going through so much pain, so she decided to take a step back from her position to focus on her mental health. In the aftermath of Gavin’s birth, Ashley had been going to EMDR therapy, where she was able to work through her trauma and talk through her triggers. After a while, Ashley took a break from therapy, but, once those symptoms returned, she contacted her therapist right away.

To other moms who are struggling during their post-HIE pregnancies, Ashley would tell them to seek out people they feel comfortable confiding their worries to. After Ashley shared her concerns that history would repeat itself with her therapist and people she was close to, like her mom, grandma, and husband, she felt like a weight had been lifted off her shoulders. Another thing that substantially reduced her anxiety levels was finding an amazing OB, who she fully trusted, and writing a list of everything she was worried could go wrong. Ashley’s OB took the time to go through this list with her and tell her what steps would be taken should any of these hypothetical scenarios become reality. It provided Ashley with comfort and a sense of control to have a definitive plan and a scheduled C-section in place.

Ahead of her scheduled C-section, Ashley also practiced exposure therapy by going on a private tour of the hospital, as she had not stepped back into that building since the day Gavin was discharged. This gave her time to slowly let go of some of the anxiety and jitters she felt being back where the original trauma had occurred, as opposed to being overwhelmed all at once on delivery day.

Fortunately, Ashley’s two subsequent pregnancies and deliveries after Gavin went smoothly. Now, she is also mom to Kaden and Corbin, three years old and almost a year old respectively. She also recently joined the Hope for HIE Medical Advisory Board, as it felt like a perfect way to contribute to the community without feeling buried too deep in the emotional trenches of HIE.

Although Ashley wishes Gavin did not have to endure what he went through, she has found and held onto the silver lining. This experience has instilled in her a remarkable sense of empathy as a pediatric physical therapist, allowing her to form deeper and more intimate connections with the wonderful families she serves. It has introduced her to lifelong friends, who have become like family over the years. It has carved in her a sense of appreciation for the little things in life. And, most of all, it’s given her a resilient, kind, amazing son, who she cannot imagine her life without. Ashley is so proud to call herself Gavin’s mommy.



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