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Tracy’s Story: Remembering Her “Big Boy”

April 30th, 2022  | HIElights of Hope

Name: Tracy Roberts

Location: Iowa, United States

Child’s Birth Year: 2017

Keywords: Loss Parent, Navigating Grief

Tracy has two older boys from a previous marriage, Spencer and Hunter, who are eighteen and fifteen years old respectively. In her current relationship with her partner, Derrick, she has a seven-year-old daughter, Mona, and her HIE baby, Chandler, born in 2017. Tracy was used to the exciting chaos that comes with having a large family with children of such varying ages. However, before the birth of Chandler, she had never known the terrifying chaos that comes with HIE.

Throughout Tracy’s pregnancy with Chandler, there were no medical complications. She had been through this three times prior, so she wasn’t overly stressed about what to expect during labor and delivery. An hour after her final OB appointment, Tracy’s water broke, so she immediately went to the hospital. Since the doctors couldn’t detect Chandler’s heartbeat, Tracy was rushed into the operating room for an emergency C-section. It was discovered that her uterus had ruptured, and her placenta was torn.

When Chandler was finally born, the umbilical cord was wrapped around his neck, so he couldn’t breathe. Two doctors whisked Chandler away, and it took them seven minutes to resuscitate him. Subsequently, Chandler was airlifted to a larger hospital where he was cooled for the next three days.

Chandler spent just shy of sixty days in the NICU at two different hospitals. Tracy will never forget that family meeting, going over the MRI results, for it was then that she truly grasped the gravity of the situation. Chandler’s basal ganglia had extensive damage, and while he still retained some motor function, his gag reflex and ability to suck and swallow were nonexistent. To assist with Chandler’s breathing and lower his risk of developing pneumonia, Tracy and Derrick made the difficult decision for Chandler to have a tracheostomy. For the surgeries to insert a trach, along with a G-tube, Chandler was transferred to an even higher-level hospital in Iowa City. After these surgeries, Chandler soon came off the ventilator and went home.

Throughout the NICU experience, Tracy felt alone. Even though the nurses were kind, none of the resources available were relevant to Chandler’s situation. What Tracy craved more than anything was human connection with someone who understood her lived experience, but the hospital was unable to connect her to any other HIE parents. It wasn’t until they were home that Tracy was able to find parent support resources, such as Hope for HIE.

Being at home with Chandler was certainly more calm than the chaotic hospital environment, but there were still many ups and downs, stressful situations, and sleepless nights. Tracy’s main focus was on maximizing Chandler’s quality of life, so she joined many different trach or G-tube related groups to find advice, tips, and tricks on how to make Chandler as comfortable as possible. Tracy knew that, as Chandler aged, his health complications would continue to progress, so she tried her best to enjoy the time she had with him.

Despite the heartache and realization that Chandler might never grow up to be the ages of his older brothers, what gave Tracy hope was knowing that there truly was a little person with a beautiful personality inside of Chandler. For instance, when Tracy came home from work and Chandler heard her voice, he made little noises that indicated his recognition of her. When Tracy picked him up, Chandler melted into her, burrowing his head into body like this was where he was meant to be. He was the most lovable, chubby, cuddly baby, with the most adorable set of curls.

Although her time with him was short, among her fondest memories include her nighttime cuddles with him. After all the other kids finally went to bed, Tracy would just sit with him in her arms, in a state of silent contentment. In those precious moments with her youngest, all her worries about the future slipped away. As Chandler slept happily in her arms, Tracy felt grateful for being able to feel such awe-inspiring, unconditional love.

After an acute asthma attack and developing severe pneumonia, Chandler passed away on April 7, 2018, at almost fourteen months old. Losing Chandler was, by far, the most painful, difficult experience of Tracy’s life. It was after Chandler’s death that Tracy became more involved in the Hope for HIE community, specifically finding support through the Loss Parents group. As a loss mom, she noticed that many people were too afraid to say anything to her about Chandler, because they didn’t want to upset her. However, what Tracy truly wanted was to talk about all the good memories of Chandler and what an incredible baby he was. The simple act of being able to post a picture of Chandler in the Loss Parents group and receiving an influx of support was a blessing.

What comforted Tracy during her journey of grief was the sentiment that there was a higher purpose behind Chandler coming into her and her family’s life, even if they didn’t quite know the specific reasons yet. Chandler certainly touched her life for the better, and because of Chandler, Tracy’s whole perception of herself and the world shifted. She learned that she was better at staying calm under pressure than she had previously anticipated. Because she had to deal with constant drooling, suctioning, and feeding, Tracy learned just how patient she could be. She also learned that, even when she felt alone, it didn’t mean she truly was alone. There were other parents out there who experienced the same emotions, feelings, and problems that she had. Chandler showed her how cruel and unfair the world could be. Yet, he also showed her just how incredibly kind it could be.

Tracy was never a person to push back, but when she had Chandler, she found herself fighting more than she ever had before. Even if it was something as simple as telling one of Chandler’s specialists, “No, you’re going to make his appointment around when we will be here, or we won’t be able to come,” Tracy was not afraid to advocate for herself and her child. She would tell other HIE parents to not hesitate to be the voice for their children. Specifically to loss parents, Tracy would say that, even though the grieving process will be an emotional roller-coaster, and even though there may be bad days, it will be okay. Maybe not today or tomorrow or the next week, but, eventually, it will be okay. She would also tell them to continue to honor the memorable moments. For instance, what helps Tracy cope with her grief is celebrating Chandler’s life by still having birthday and angelversary parties for him. Honoring those memorable moments doesn’t necessarily mean having an organized party—it can mean simply reflecting upon an experience with your child that brought you joy. When Tracy felt like she was sinking in an ocean of grief, she reflected upon the happy moments, such as the first time Chandler sucked on her finger, even though the doctors said he would never be able to suck, or the times he made adorable kissy faces with his lips.

Even though Chandler was only here for a short period of time, his impact transcends time. He was the greatest, most precious baby ever. From the time he was in the NICU, the largest of all the babies there, he was always Tracy’s “big boy.” Big, not only in terms of stature, but in terms of strength, of heart, and of beauty.

 

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