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Lisa & Rob’s Story: Team Peter Through it All

April 30th, 2022  | HIElights of Hope

Even before becoming HIE parents, Lisa and Rob were people who embraced the unknowns and followed their hearts, in spite of future uncertainty. Lisa grew up in Washington State, while Rob grew up in England, almost half a world away. They met at a backyard wedding in Washington, where they both experienced love at first sight, which seemed like it was straight out of a movie. Lisa had a background playing softball competitively and coached softball at the time they met, while Rob worked for Nissan in Europe and lived in Paris.

They did long distance dating for a while, but they both soon came to realize they were ready to take things to the next level. In June 2016, they both took a huge leap of faith—Rob transferred to Nissan in Canton, Mississippi, and Lisa decided to come with him. From there, their relationship grew even deeper and moved fast. They married in August 2017, and, by January 2018, Lisa was pregnant with their first child, Peter. Both Lisa and Rob were overwhelmed with excitement that their family of three (the two of them plus their dog) would soon become a family of four.

As is the case with many HIE families, Lisa’s pregnancy went smoothly up until the birth. Lisa and Rob chose to not know the sex of their baby, which added to the anticipation and excitement. At the forty-week mark of Lisa’s pregnancy, Lisa and Rob went to the airport to pick up Lisa’s mother, who had flown down for the birth of her grandson. From the airport, they drove immediately to Lisa’s forty-week appointment. On the way, a car rear-ended them. Luckily, no one was injured, and, when Lisa’s obstetrician informed her that her blood pressure was elevated, Lisa assumed it was due to the adrenaline associated with the car accident. But, just to be safe, and because Peter was measuring a little big, she went to the hospital.

At the hospital, the physicians wanted Lisa to be induced. Although her induction was going slow, for the most part everything was fine—never did Lisa or Rob imagine what was to come next.

Lisa was in active labor for forty-five minutes, and, for the last fifteen minutes of it, Peter was in distress. His head was showing when they lost his heartbeat. At that point, chaos ensued. Multiple doctors rushed in. Lisa was also in immense pain from preeclampsia. The doctors did a vacuum extraction to facilitate the delivery. Peter came out fast, and Lisa only saw him briefly as he was moved, but was unable to hear any sounds or see any movements. Fortunately, Peter was resuscitated in ten minutes. Lisa, in her 112°F fevered state, frantically asked Rob about the baby’s sex, as she didn’t even know if her baby was a boy or girl at that point.

Peter was born at 9:47 p.m. In the middle of the night, Rob was finally able to go down to the NICU and see his son. When he saw him, Peter was on the cooling mat, getting his first blood transfusion. Since Lisa had to recover and get her infection down first, it was almost a full day before she was able to see Peter. In those initial hours and days immediately following Peter’s birth, Lisa and Rob felt helpless. It was scary to see their son hooked up to machines and wires and feel like there was nothing they could do to ease his discomfort. Once, during his cooling, they sat next to him, reading to him, when a nurse came in and told them, “You guys need to stop. You don’t want to overstimulate him…rest is what he needs.” In that moment, Lisa felt terrible. She’d genuinely thought she was doing the right thing, so finding out she could be inadvertently interrupting Peter’s healing process was difficult to hear.

After that, to avoid a similar experience, Lisa directly asked the doctor, “What is the best thing we, as parents, can do to help Peter survive?” The doctor said that Lisa should focus on pumping her breast milk and that at least one parent should be present for rounds each day. In the beginning, when Lisa was still recovering in the hospital, a nurse came into her room every four hours with a breast pump. Even though it wasn’t an easy process, and Lisa initially was having trouble getting breast milk, she never stopped trying. Because of her persistence, by the time Peter’s thirty-five days in the NICU were up, he was receiving all his nutrition exclusively from breast milk.

Throughout the NICU experience, when Lisa felt lost and adrift, Rob was there to serve as her anchor and support system. She attended rounds, but, often, receiving such an influx of information was overwhelming and hard to process. She’s grateful that Rob was by her side, taking notes and writing down everything the doctors were saying. They are both proud that, even with all the stress and chaos of HIE, they were there for each other and grew even stronger as a couple because of it.

Peter’s MRI showed brain damage predominantly in the basal ganglia, but the neurologist was unable to give definite answers about what Peter’s future would look like. Lisa and Rob were told that, in the best-case scenario, Peter could look largely unaffected. In the worst-case scenario, he could fall on the severe end of the spectrum.

After discharge from the NICU, they didn’t just wave a permanent goodbye to the hospital. During Peter’s first year of life, he landed on a pattern of doing fine for a couple weeks at home, but then going back to the hospital, whether for respiratory viruses or infantile spasms. It seemed like a miracle if Peter held out for one or two months before being admitted again. While this constant back and forth was overwhelming, Lisa and Rob viewed each hospital visit as gaining one more piece of the puzzle and moving one step forward in learning how to best take care of Peter. For instance, at one hospital stay, they were given a pulse oximeter machine to monitor Peter’s heart rate and oxygen levels at home. At another visit, they ended up with a respiratory vest designed to help Peter avoid respiratory infections. At yet another visit, Lisa and Rob were taught how to deep suction to remove mucous secretions from Peter’s airway like the respiratory therapists did at the hospital. Thus, as they moved forward in their journey, they have collected more and more puzzle pieces along the way.

In terms of Peter’s diagnoses and subsequent outcomes, Peter falls more on the severe end of the spectrum. He has mixed-type spastic quadriplegic cerebral palsy, dystonia, hypertonia, hypotonia, cortical visual impairment, hearing loss, symptomatic epilepsy, infantile spasms, chronic lung disease, sleep apnea, mental developmental delays, and an inability to swallow or manage secretions, and is thus being G-tube fed. He is very busy, living a more structured lifestyle than basically every other toddler. He goes to three different therapies every week—speech, occupational, and physical therapy—as well as early intervention for vision and hearing.

Even though Peter’s life may look different from most, he’s not defined by his medical diagnoses. Lisa and Rob wish others could see that he is also a toddler with likes, dislikes, and his own unique personality. Lisa and Rob have since had another son, Zach, who is almost three months old. Lisa notices that, when anyone asks about Zach, they want to know if he smiles a lot or what movements he makes. However, when people ask about Peter, they’re often more interested in hearing a list of his diagnoses or what he can’t do. Lisa and Rob want people to know that Peter is more than just a description of everything that is “wrong” with him. They want people to know that Peter is social, and that, when he goes to his appointments, he smiles at everyone and brightens their day. They want people to know that Peter is well-mannered, but, like any other toddler, he has a touch of mischief—he might not reach for things very much, but, when it comes to a catheter, he can hit it like a ninja. They want people to know that Peter has a life outside of therapy…he loves Sesame Street, bright colors, knocking over blocks, riding on swings, and his baby brother dearly. And, while he may not be able to utter real words, he still talks and communicates a lot.

Despite the obstacles the family has encountered, the household has continued to be a space of love, hope, and togetherness. On top of all the health issues they were already dealing with, Rob was diagnosed with testicular cancer. For treatment, he received an orchiectomy and a lymph node dissection. If Rob and Lisa wanted to have more kids naturally, they were informed to do that ahead of the lymph node dissection surgery. They tried (triumphantly) for a second pregnancy, and Rob, fortunately, went on to have a successful dissection.

Life this past year certainly has not been easy. In the midst of the pandemic, Lisa had a high-risk pregnancy, developing gestational diabetes as she neared her due date. Just when they expected Rob to be in remission at his three-month follow-up in December, he received the news that, somehow, the cancer had jumped to his lungs, and chemo would be necessary. Then, Peter spiked a fever on New Year’s Eve, testing positive for COVID-19 in the ER.

To complicate matters further, it was difficult finding home nurses to relieve some of the daily burdens of caretaking off Lisa and Rob. Their family lived far away, either in Seattle or England, and none of their local friends were equipped to handle Peter’s extensive needs. Thus, when Peter had COVID-19, the two options for who was to accompany him to the hospital and during his recovery process at home were not ideal—either a woman with a high-risk pregnancy or a man about to start chemo. Lisa decided to stay and quarantine with Peter at the hospital and at home, careful to follow all the safety precautions, while Rob stayed in a hotel to quarantine. Luckily, although Peter had some temporary developmental regression after contracting COVID, he made a safe recovery.

Sometimes the prospect of this being a never-ending journey, characterized by one step forward and two steps back, seems too exhausting. There have been times where Peter makes great progress, such as finally rolling over, only to have an episode with infantile spasms or COVID-19 reverse the momentum. However, Lisa and Rob have learned that, as long as they continue to stick together as a family unit, and remain consistent with Peter’s therapies, the time it takes for Peter to recover from these regressions is easing up.

And, instead of concentrating on the negatives, Lisa and Rob focus on all they have been grateful for this past year. For instance, in pre-pandemic times, because the hospital was forty minutes away from their house, Peter spent one to two hours a day, three to four days a week, sitting in his car seat, en route to various appointments. But now, because of telehealth and virtual therapy sessions, his jam-packed schedule has freed up greatly. Because Rob was also working from home for a few months, Peter had more time to interact with his parents, leading to big developmental improvements.

Even though Peter’s life will not look like Zach’s life, or the life of other neurotypical children, Lisa and Rob are focused on giving Peter all the opportunities to live his best life possible. Being a competitive softball player for most of her life, Lisa was always used to showing up and giving her all so that her team could thrive on the field. Now, Lisa maintains this same mindset of endurance and performing to the best of her ability, just with a different team in mind—Team Peter, composed of her beautiful family, Peter’s healthcare team, and the larger HIE community. When she looks at Peter’s physicians and therapists, she doesn’t see an “us” and a “them.” Instead, she views Peter’s healthcare team as the coaches and her and Rob as the players, all working toward a collective goal.

Lisa wants other HIE parents to know that, once they start forming collaborative relationships with healthcare providers, that is when they give their child the best chance to “win.” Winning doesn’t always mean accomplishing a specific developmental milestone, but it does mean giving a child his/her best quality of life. In the same way she would prepare for a softball game, Lisa has learned how essential it is to make game plans throughout the HIE journey, whether that is coming up with a plan on how to best organize medical supplies in order to respond to Peter’s seizures quickly, or coming up with a schedule for “practicing” therapy exercises. When “practices” are draining, Lisa and Rob reflect back upon those moments of hope that inspire them to keep moving forward—like the moment Peter had his first smile at the IKEA in Memphis to the moment Peter lit up when Zach first arrived home from the hospital.

Lisa and Rob were fortunate to learn about Hope for HIE while Peter was still in the NICU. Since joining the group, they’ve connected with other HIE parents on an emotional level and become aware of treatment options and potential diagnoses they otherwise would not have considered. For instance, Peter wasn’t diagnosed with cortical visual impairment (CVI) at first, but, after seeing parents in Hope for HIE post about it, they took Peter to the ophthalmologist, who confirmed the diagnosis. If it were not for parents being open about their experiences with infantile spasms (IS), Lisa and Rob don’t know how they would have handled Peter’s IS.

Since the main parent support forum is female-dominated, being on the HIE Dads page has been a really meaningful way for Rob to see the perspective of other fathers and form bonds with them—he’s even part of a Fantasy Football League with fellow HIE dads!

In addition to Hope for HIE, Lisa is also a member of many parent groups relating to diagnoses/conditions that Peter has, from G-tube fed groups to CP groups to groups for hearing aids…and even groups for parents of young children with glasses. She would emphasize how important it is for fellow HIE parents to connect with others as a way to seek out resources. Once you begin reaching out for support, and exploring different online communities, you’ll be amazed at how many parents are willing to lend a helping hand.

Rob would urge other HIE parents, when interacting with physicians, not to be afraid to ask the “dumb” questions, and ask for any diagnosis to be written down. While an official diagnosis can seem scary and definitive, it opens up a whole world of resources, as well as facilitates the process of receiving insurance coverage.

In addition, to a medical provider who interacts with HIE families, Rob and Lisa would say that, even though you may have hundreds of the same interactions every week, you might be the one person that an HIE family has been waiting weeks, or even months, to see for answers, who could dictate differences in a child’s quality of life. Lisa goes into each doctor’s appointment with an extensive list of questions, written down, and when doctors take the time to sit down and answer all her questions (no matter how silly they may seem), it makes a world of difference. They would also remind physicians that many HIE parents may be dealing with trauma, so finding ways to support parents—such as writing things down for parents who are unable to process all the information in the moment—is essential.

This may not be the future Lisa and Rob envisioned, but they have grown so much after Peter’s birth, as individuals and as a couple. Having a background in competitive athletics, Lisa always compared her abilities to the abilities of other players. At the beginning of this journey, Lisa couldn’t help but compare her journey to the journeys of other HIE parents who opened up about their experiences on social media. However, she soon realized that every journey is unique and different, and comparing Peter’s quality of life to that of other children wasn’t productive. Just because Peter couldn’t walk, while another child affected by HIE could, that didn’t make her a failure as a mother. Even if there were going to be milestones Peter would never reach—even if she needs to change his diapers for the rest of his life—those milestones are not the sole measure of success or happiness. What matters most is focusing on Peter’s individual trajectory, loving Peter for where he is at, continuing to collaborate with everyone who is part of Team Peter, and not letting HIE stop them from showing Peter the wonders of life.

In the area where Lisa and Rob live, in Mississippi, it is rare to see another child with a disability out and about in public spaces. However, they take pride in giving Peter those traditional childhood experiences of going to the playground or enjoying a nice brunch at a restaurant on the weekends. Taking Peter out to participate in different activities has meant coming up with innovative creations to transport Peter’s equipment (e.g., by making a G-tube backpack). Lisa and Rob want other parents to know, even if their child has a disability, that doesn’t necessarily mean they have to remain tied to the house. By thinking of creative ways to improve accessibility for their child, they can find a whole world outside the front door, waiting for them to explore.

Rob and Lisa also hope that, by taking Peter out into the public eye, they begin to shift the narrative of people with disabilities as so-called “charity cases.” Yes, Peter has cerebral palsy, is G-tube fed, and may not be on a “normal” developmental trajectory. But he also has a contagious smile and a vibrant, social personality. Moreover, through sharing their story, Rob and Lisa also hope to emphasize that, no matter where one falls on the spectrum of HIE outcomes, every story is worthy. There is value in each story, whether one’s HIE child can run around the playground or has passed away.

Rob and Lisa have a private Facebook group where they share updates about their lives and Peter’s life with friends and family. As time has passed by, the purpose of this group has expanded to encompass spreading awareness about HIE and disability within their circle of loved ones. Even those closest to them sometimes have the mindset that changing Peter’s diaper or him being fed via a G-tube is just a phase he’ll grow out of. Through the group, Rob and Lisa hope to convey that a child with HIE will not improve overnight and that life with HIE comes with constant uncertainty. However, even if Peter never gets off the G-tube, or he is never able to change himself, he will still be loved dearly, and his life will still have meaning.

Even though that uncertainty about the future will always be present, there is one thing they can say for sure—no matter how tough their opponents are, Team Peter will continue fighting through it all.

Photography credit: Destiny Perkins Photography