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Charlotte’s Story: Finding Footprints on the Moon

April 30th, 2022  | HIElights of Hope

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Name: Charlotte Howarth

Location: Greater Manchester, United Kingdom

Child’s Birth Year: 2019

Keywords: Post-Birth HIE, PTSD & Mental Health, Work in Medical Field, Self-Care

“Don’t tell me the sky’s the limit when there are footprints on the moon.”

-Paul Brandt

Charlotte lives in Greater Manchester, England, with her husband, Stuart, and her HIE daughter, Annie, who was born in 2019. Charlotte and Stuart had been trying for a baby for five years, so when Charlotte finally discovered she was pregnant via in vitro fertilization (IVF), she felt like all her dreams were finally coming true. Her pregnancy was essentially perfect, void of any major sickness or complications. While Charlotte ran into some small hiccups during the labor and delivery process, everything still seemed fine after Annie was born via emergency C-section. Charlotte and Stuart were able to have that joy-filled experience, finally holding the baby girl they had longed for so deeply all those years, and, after a day, they were able to take Annie home.

But three days after the birth, while Charlotte was feeding Annie, Annie made an unusual noise and went completely unresponsive. Charlotte was absolutely terrified and, with adrenaline pumping through her system, immediately started resuscitating Annie. In that moment, Charlotte was grateful for her background as a pediatric learning disability nurse, as she knew how to do CPR. In less than five minutes, the ambulance arrived at the house and rushed Annie to the local hospital. After fifteen minutes of resuscitation prior to arriving at the hospital and fifty-two minutes of resuscitation after arrival, they were eventually able to locate a heartbeat.

Annie was then transferred to the PICU in a larger children’s hospital, where she could get more comprehensive and specialized care. After her daughter’s sudden infant cardiac arrest, Charlotte heard the scariest possible phrase for a parent to hear: “We don’t think she will make it through the night. Spend as much time with your daughter as you can.”

But Annie did end up, somehow, making it through the night, and during her two-week stay in the PICU, she continued to surpass all initial expectations. Even though Annie’s MRI showed severe global damage, and doctors told Charlotte and Stuart not to expect much in terms of life expectancy, they held onto the hope that things would get better.

After the first week in the PICU, Annie was able to come off the ventilator and breathe on her own. During this time, the hardest part was probably that, even after running tests, none of the doctors could figure out why the cardiac arrest happened. No one ever used the diagnosis word of HIE, instead just stating that Annie’s brain was damaged due to oxygen deprivation.

Because Charlotte was a nurse by profession, she knew what some of the monitors meant. When providers chatted in the corner about Annie’s condition, Charlotte understood what they were talking about. In hindsight, her experience in the medical field, in some sense, did prevent Charlotte from being more confused in an already confusing situation. It also helped Charlotte feel more empowered to challenge doctors if she didn’t agree with their approach or communication style. But, in another sense, there were sometimes things Charlotte would have preferred not to be aware of, because it was just too overwhelming to emotionally process all at once. In her line of work, while she had seen some kids like Annie, who had gone on to lead relatively independent lives, she had also seen some kids go in the completely opposite direction. So, in those moments, knowledge was power, but it also felt like a harsh brick of reality that attempted to cloud her hope.

During those difficult PICU days, Charlotte appreciated the support she received. She and Stuart were allowed to stay close by the hospital in the Ronald McDonald House, which allowed them to be by Annie’s side for a vast majority of the time. Charlotte’s family members showed up for her in so many ways, and she became close friends with another family whose child was also in the PICU. Charlotte set up an appointment with a psychologist in the hospital, where she talked through how she was surviving day-to-day. But after that one appointment, she felt like she was forced to process everything that had happened on her own.

In addition, Charlotte was grateful that Annie had a diverse team of providers involved in her care and was able to start various therapies at such a young age. However, the sheer number of specialists was overwhelming, and it sometimes felt like Annie was a National Health Services (NHS) case study, as opposed to the daughter Charlotte had bonded with during pregnancy. Charlotte felt even more overwhelmed due to specialists sometimes giving conflicting advice. For instance, the speech and language therapist told Charlotte that Annie needed to be bottle-fed, while the dietitian endorsed sticking to the NG-tube for the time being. Once Annie was sent home, after being transferred back to the local hospital for two weeks, Charlotte felt like she was forced to find the answers on her own.

The transition home was far from easy. Charlotte felt like she was still in fight-or-flight mode for months, and she was terrified history would repeat itself. She was terrified, if she took her eyes off Annie for even a second, Annie might have another sudden cardiac arrest. Being in the same environment where Annie almost died brought back all the memories of the trauma for Charlotte, and both she and Annie basically never slept through the night. To make matters worse, COVID-19 soon hit, so Charlotte was home all day, every day, rarely giving herself a break from her role as caregiver.

But one of the greatest blessings in those early days was finding Hope for HIE. It wasn’t until a follow-up letter from the pediatrician that Charlotte ever saw the term HIE, but to have that label and diagnosis for what happened to Annie, instead of all that ambiguity, was comforting.

One night, when Charlotte was up doing research, she came across the concept of neuroplasticity. When she saw a link on the website for an HIE support group, Charlotte immediately clicked on it, remembering “HIE” from the pediatrician’s letter. And she is so glad she did, for the Hope for HIE community was an absolute lifeline for her, especially in the first year of Annie’s life. On top of the isolation associated with the pandemic, Charlotte felt quite isolated because her family and friends didn’t quite get what she was going through. People who had never personally been impacted by HIE didn’t grasp the level of future uncertainty that Charlotte had to deal with, so they often asked her questions about what Annie’s adulthood would look like, or whether this meant Annie would have to go to a residential home for disabilities. It was so freeing and validating to express her emotions to a community of HIE parents who understood how traumatic it was to live not knowing the answers to any of those questions. There were times where Charlotte still felt like an outsider even within the HIE community, since Annie’s HIE happened post-birth as opposed to during delivery. Regardless, it was helpful to find even just a few other families who’d experienced something relatively similar and connect with them for advice.

Charlotte also coped with the unique loneliness of being on maternity leave during the pandemic by working through her trauma in Eye Movement Desensitization and Reprocessing (EMDR) therapy. As this journey has progressed, it’s been a time of self-discovery and self-growth as much as anything else. Charlotte realized she spent so much time during the first months of Annie’s life worried about what life would look like down the road that she missed out on many of the daily pleasures and joys. Over time, Charlotte has learned to change her mindset from being fixated on the future to living more in the moment.

Charlotte also acknowledged that, as amazing as Annie was, she was slowly wearing herself out by not taking breaks throughout the day. When Annie started going to nursery at six months old, Charlotte found that she suddenly had free time to look after her own well-being. With this new downtime, Charlotte started doing therapeutic cleaning around the house, reading inspirational books, and having socially distanced hangouts with friends. She found that having a self-care regimen, and doing the hobbies she used to love, reintroduced a comforting sense of normalcy and familiarity back into her life.

During her maternity leave, Charlotte was constantly consumed by thoughts about what happened and what was going to happen. Finally going back to work was extremely healing, as Charlotte began to find her identity outside of just being a mother. Now that Charlotte knew what it was like to be the parent of a medically complex child, she found that she was better able to empathize with, and support, the families she interacted with as a pediatric learning disability nurse. She is so proud of herself for finding the strength to turn her experience into a positive, for creating purpose from her pain. Charlotte has now gone on to take a team leadership role at work so she can continue to offer families the peace of mind she had felt deprived of for so long.

Now, Annie has her difficulties. It’s very likely that she has cerebral palsy, although, in the UK, children are rarely formally diagnosed before the age of two. However, Charlotte is grateful for all that Annie can do. Annie sits unsupported, is vocalizing, and is always laughing. Her laugh is absolutely infectious, and it is probably Charlotte’s favorite sound in this world. Annie has the boldest personality ever, and she loves singing and dancing along to nursery rhymes. Annie wants all the attention on her, and she gets giddy when other people clap for her. So, even when Annie does something that may not seem like a huge deal, Charlotte claps for her.

Throughout all of this, Charlotte has learned to find hope in every single inchstone. Those tiny victories that families of neurotypical children may take for granted, such as the first time a child is able to hold a cup, are celebrated as huge accomplishments in their household. The first time Annie was able to bear weight on her feet, Charlotte remembers crying tears of joy, having to go upstairs to compose herself. And even just seeing Annie interact with their two dogs on a daily basis, or seeing the look on Annie’s face as she tries to take in what’s going on in the environment, fills Charlotte with irrefutable hope. For, every day, Annie reminds Charlotte that life is worth fighting for. The fact that Annie is still here, and that Charlotte is a mother in the first place, are miracles in and of themselves. Seeing how tough Annie is, in spite of everything she has endured, has made Charlotte realize that she is tough too.

The quote that Charlotte continues to reflect upon is: “Don’t tell me the sky’s the limit when there are footprints on the moon.” Especially in the first few months, it seemed like people were constantly setting limits on what Annie would and wouldn’t be able to do. In reality, Annie has proven time and time again that she won’t let anyone put a limit on her potential. Charlotte would tell other parents that, while doctors do often have to offer different scenarios, each scenario is only hypothetical and not always a reality. The only person who can truly define what your child is capable of is your child, and that definition will unfold over time.

Charlotte hopes more medical providers will find ways to actively infuse some lightness and positivity into all conversations, even those that need to be heavy because of a grim prognosis. In addition, there were often times in the journey that Charlotte would feel guilty for being sad, like she wasn’t being grateful for the fact that Annie was still alive when she easily could have died that night. Charlotte would emphasize to other HIE parents that it’s completely valid to not feel happy or grateful all the time. Even if you didn’t lose your child, there is often still grief that comes with those secondary losses, such as losing the vision of your child running around outside or leading an independent adult life. But, when you feel low or look too far ahead, try to enjoy and focus on what is present right in front of you. For, at the end of the day, no amount of worrying in the world will change what will happen in the future.

In the end, while it’s not the motherhood Charlotte yearned for those five years she tirelessly tried for a baby, it is, in many ways, so much more. And, in the years to come, Charlotte cannot wait to see all the footprints Annie will leave on the moon.