Name: Monique Arnoldus
Location: Dubai, United Arab Emirates
Child’s Birth Year: 2019
Keywords: Severe Outcome
I find myself in a world unknown to me
I looked around but there wasn’t much to see
The thoughts of how I even got here
Used to fill my mind with so much fear
My little boy, not knowing what’s going on
Yet he fights, and he is oh so strong
Though not everyone will ever understand
That sometimes all I need is a helping hand
To hold onto hope is what sets me free
For this is HIE and me
-A poem by HIE Mom Monique
Monique made the scary, but exciting, move from her home country of South Africa to Dubai eleven years ago, at the age of twenty-five, due to her job in the hospitality industry. Through her job, she soon met her husband, who had immigrated from Sri Lanka to Dubai five years prior to her. As much as they loved their professions, life in Dubai often felt lonely, because virtually none of their family members lived anywhere near them. When they found out they were going to become parents, they were incredibly excited to put down roots in a place that was beginning to feel more and more like home.
April 11, 2019, was one of the best, and worst, days of Monique’s life. Zack was delivered naturally, but doctors used a vacuum to assist with the delivery. This was no gentle process, and during the twenty-six-hour labor, Zack’s shoulder was fractured due to aggressive suctioning. Monique remembers the way the doctor’s face was a portrait of panic, fear, and urgency at the same time. Everyone in the room screamed for Monique to push, even though she was utterly exhausted, and it truly felt like she was in some chaotic alternate universe.
When Zack came out, he was blue, silent, and did not have a detectable heartbeat. Soon after, Zack underwent cooling and was transferred to a more specialized children’s hospital, where he stayed for the next four months. The entire time, Monique felt in the dark, not sure where to begin to seek resources. She was told that Zack had had substantial brain damage and Stage III HIE, according to the Sarnat Classification.
The neurology team estimated that Zack would only live for a week and left it at that. They didn’t explain what the future would look like should Zack survive, and it felt as if the entire world had given up on him. The doctors didn’t have much hope. Zack’s HIE was so severe and rare that they even used his MRI results for research—they had never seen a case like his before. Although no one believed in him, Zack defied the odds, surviving and continuing to fight. Whenever Monique has thoughts about how she failed as a mother, she reminds herself that the simple fact that Zack is here is a blessing in and of itself. During the days in the hospital and beyond, Monique has kept her faith close to her heart, viewing every day that Zack is still with her as a miracle.
When Zack survived past that initial week, it was not only completely uncharted territory for Monique, but also for Zack’s medical team. Monique couldn’t discern whether doctors intentionally avoided giving her information about future expectations or whether they genuinely had no idea about the prognosis themselves. For a long time, it felt like it was just the three of them—Monique, her husband, and Zack—against the world. There were no local support groups for HIE parents, nor were there many local resources for Zack to receive the care he deserved. Eventually, Monique decided, if she was not going to be referred to support resources, she would seek them out herself.
She came across Hope for HIE on Facebook, and immediately, her notion of being the only family to have ever gone through this was wiped away. She read comments of other parents, taking in all the diverse stories and images of children with HIE. Monique excitedly told the doctors about the group in hopes that the next HIE family to walk through the hospital doors would not have to feel the deep-seated isolation she felt. Monique also became active on social media, starting an Instagram page for Zack, to spread awareness about HIE and to show parents they are never alone. The connections she has forged with other HIE families through social media—even though they may be oceans apart from her—are ones Monique will forever be thankful for. She is proud of all the efforts she takes to give others a glimpse into the day-to-day realities of taking care of an HIE child with severe outcomes.
Now, at two and a half years old, Zack is a healthy boy, who brings so much joy and light into Monique’s world. Yes, he may be ventilator dependent, and he cannot (yet) see, hear, talk, or walk. But that doesn’t mean that Monique loves Zack any less or that hope is not still an ever-present force in her life.
Monique’s advice to other HIE parents would be this: do what your heart tells you, focus on the can rather than the can’t, lean on your faith, and remember that some version of hope exists even in the darkest of situations. Time and time again, just as Monique felt like there was nothing left inside of her, she was reminded that hope is like a tardigrade—an entity that can survive in any space. She will never forget the day Zack went in for his trach and PEG tube surgery at two months old. As she waited anxiously outside the doors of the operating room, crying and praying that Zack would respond well to the anesthesia, hope is what pulled her through that day. Hope is what has pulled her through every day after that, helping her paint a beautiful and colorful life. The life she now leads at thirty-six years old is never one that Monique would have anticipated when she first moved to Dubai all those years ago. But it is one marked with so much pride in herself, in her family, and in the larger HIE community.
Monique is proud that, since the day Zack was born, she has stood tall, taking the adversity thrown her way in stride. She is proud that she has not let Zack’s disabilities stop him from experiencing the world around him, taking him to the beach, restaurants, and hotels. She is proud that she is able to change Zack’s trach at home alone, even though, in the days, after discharge, she was so afraid of messing up. She is proud that she lives by the philosophy that it is okay to take breaks, to ask for help, and to be honest when she is struggling. When Monique needs a therapeutic outlet for her stress, she leans on her creative side and her love for arts and crafts. She is also proud that more than twenty nurses have thanked her for giving them tips and tricks for how to care for babies with HIE. Through her vulnerability and her advocacy, Monique works to create a more supportive experience for HIE families to come.
Most of all, Monique is proud to call herself Zack’s mom, for he is unbelievably wonderful and strong.
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