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


Brittany’s Story: Weathering the Storm

April 30th, 2022  | HIElights of Hope

Name: Brittany Beimourtrusting

Location: Florida, United States

Child’s Birth Year: 2015

Keywords: Home Birth, Communication Challenges, Advocacy Work, Pregnancy After HIE

“The smoothest stones have weathered the roughest storms.”

Brittany is no stranger to loss. She had to pick up the pieces of her life after her only sister was killed in 2001, and then again when a close friend died in a scooter accident two weeks before the birth of her first child, Dreaven. But it wasn’t until Dreaven loomed on the border of life and death after suffering from HIE that Brittany truly grasped just how fragile and precious life is.

In 2014, after Brittany and her husband discovered they were expecting their first child, they were ecstatic. Because the hospital setting was associated with traumatic memories from Brittany’s past, she opted to have a natural birth at home. For the most part, she felt confident in her decision—her midwives had years of experience and were very knowledgeable. The end of her pregnancy, however, was a time marked by stress. On top of grieving the loss of her recently deceased friend, Brittany was two and a half weeks past due. She was scared that, because she was already forty-two and a half weeks into her pregnancy, she would need to go to the hospital. She was relieved when her water broke before she needed to be admitted.

Throughout the labor, Dreaven’s heart rate was monitored regularly in between contractions, and until the very end, everything seemed to be fine. On May 15, 2015, when Dreaven was finally born, the atmosphere in the room shifted dramatically from one of excitement to one of panic. Dreaven did not breathe or cry, and her complexion made her seem lifeless.

The midwife immediately started CPR and hooked Dreaven up to an oxygen tank, after which an ambulance arrived to rush her to the hospital. The primary doula informed Brittany that there had been a knot in the umbilical cord that pulled tight during pushing. Because of this, Dreaven didn’t receive an adequate blood and oxygen supply at the end of labor. Nothing seemed real, and those images of Brittany holding tightly to her little baby girl at home were shattered, replaced by the image Brittany had tried to avoid—the hospital.

When Dreaven finally arrived at the NICU, she was, by far, the biggest baby there. Dreaven immediately underwent cooling therapy, and it was hard for Brittany to see her little baby in so much pain. Through all of this, Brittany remembers one seemingly small, but meaningful act of kindness when a nurse told her, “Brittany, I almost shaved Dreaven’s hair off for the cooling cap, but I just couldn’t do that to you.” Dreaven had been born with a beautiful head of hair, so the nurse’s efforts to maintain that sense of normalcy for Brittany was something she is grateful for.

Almost right away, Brittany started a private Facebook group to post updates about her daughter. Soon, people outside her close circle requested to be added, and one mother in the group connected Brittany to a friend who had gone through a similar situation. Through this HIE mom, Brittany found out about Hope for HIE.

The first time she came across the parent forum, Brittany scrolled for what seemed like hours, absorbing all the different stories and pieces of advice. In particular, she kept reading all the horror stories about the dreaded MRI day, and felt a sense of impending doom about Dreaven’s upcoming MRI. However, Brittany was pleasantly surprised during the MRI meeting. The neurologist handled the conversation extremely well, and instead of painting a definitive portrait of negativity, he said, “Look, Dreaven has obviously experienced a very traumatic injury, and while I suspect problems may arise later down the line, there is no crystal ball to see what the future will look like.” Admitting his uncertainty in a gentle way left room for Brittany to hope, and given all she had endured, hope was everything. Hope was the essential fuel that powered her journey during the thirty-three days in the NICU and beyond.

When Brittany and her husband finally had the brief opportunity to hold Dreaven, all worries about the future faded away. Brittany gazed into the eyes of her first child and just felt immense love, focusing on this precious moment in time.

During their stay, the inconsistent messages they received from NICU nurses about whether or not it was okay to hold Dreaven were frustrating. Some nurses emphasized the importance of kangaroo care and skin-to-skin, while others told her that her baby was too sick to be held. In an already confusing situation, this did not help Brittany find any more clarity.

In addition, the NICU was overcrowded, so Brittany wasn’t able to receive a consultation from a speech/feeding therapist until just days before discharge. One time, as she held her daughter, Dreaven appeared to be rooting. But since Brittany had not received clear instructions, and because she didn’t want Dreaven to potentially choke, she felt terrified. It wasn’t until discharge when Brittany was told nonchalantly, “Oh yeah, you can try breastfeeding at home and just come back if you need help.” This became a major sore spot for her during that first month. It seemed like none of the doctors or nurses knew how to handle a baby with HIE, so the list of unknowns only kept expanding during their stay.

Dreaven was discharged with a G-tube, and those first days at home were overwhelming. Brittany and her husband never planned on being parents who woke up their baby for regimental feeding, so being thrown into a G-tube feeding schedule of every three hours around the clock was intense. By the time their insurance company set them up with two weeks of home nursing, they had already been at home for a month and a half. In that time post discharge, Brittany and her husband had to figure out basically everything on their own, without any formal support. By October, they were fortunate enough to be approved for full-time nursing for Dreaven, and since then, they have had the same night nurse, who comes to their home six nights a week. Brittany and her husband both work full time, so having someone there to take some of the burden off their shoulders and allow them to get rest at night has been a lifesaver.

In addition, from the get-go, they enrolled Dreaven in early intervention therapy. It was during her therapy sessions that Dreaven’s cute, stinker personality shone through. Brittany thinks of Dreaven as her stubborn little diva princess, and even as a tiny baby, Dreaven tried to avoid therapy, pretending to fall asleep when she heard the speech therapist’s heels clicking across the floor. She isn’t always like this and will work extremely hard when she wants to. On her good days, she can be very motivated and will even take a few steps in her gait trainer. But like everyone, she has difficult days, when she looks at Brittany, shaking her head as if saying, “Uh uh, this isn’t happening.”

Even though she is nonverbal, it is through these expressions that Dreaven speaks her mind. Brittany wholeheartedly believes that HIE kids all have a voice and that there is so much more to them than is often assumed—the key is empowering them to use that voice in a way that works for them, even if it’s not through verbal speech. For instance, Dreaven is starting to work with a Tobii Eye Tracker that is connected to her wheelchair.

After Dreaven’s birth, Brittany often spiraled into thoughts of self-blame, wondering if it was her fault that Dreaven experienced the HIE event because she chose to do a home birth. What really helped her cope with the thoughts of Did I do this to Dreaven? was speaking to her friends who were labor and delivery nurses, as well as certified nurse midwives. Hearing their perspectives was refreshing and reassuring. One of Brittany’s friends, a nurse midwife, told her about a patient who experienced a stillbirth, in a hospital, due to a tight true knot, which helped Brittany realize the situation could have happened anywhere.

Brittany went on to have two more children (both boys) via home birth. Her middle child, Tybalt, was born in May 2017, and her youngest, Aksel, was born in November 2020. When she was pregnant with Tybalt, she kept going back and forth trying to decide between a home or hospital birth. Upon speaking to her physicians, they all agreed that a home birth was a safe option. And because Brittany knew in her heart that she needed an environment where she felt safe, she decided to go the home birth route with a well-experienced midwife. The births of her two sons were both beautiful and truly healing for Brittany, showing her that what happened with Dreaven was never her fault. It wasn’t anyone’s fault; it just happened.

Brittany had graduated with a Master’s in Health Science and Rehabilitation Counseling before having children, so her background has always been in disability rights. She currently works at a community college through the Department of Veterans Affairs, assisting veterans—both with and without disabilities—access benefits they are entitled to. Because of her experience, she has a hopeful spirit around disability, holding the mindset that a disability does not take away from a person’s heart, soul, and spirit. A disability doesn’t make anyone less human, and as a society, we need to empower those with disabilities by making the world more accessible for them.

For other parents who have a child with HIE, Brittany admits that HIE is a traumatic, horrible experience, whether it happens before, during, or after birth. Especially in those early days, it may feel like the weight of the world is on your shoulders. After Dreaven was born, Brittany felt like she was drowning in a sea of panic, thinking she would have to sell her house, leave her job, and uproot her entire life. However, when you find yourself spiraling down this path of worrying over how the future will unfold, just pause and breathe. It’s hard, no doubt about it, but try to focus on the here and now. By homing in on those daily moments spent with Dreaven—by focusing on the warmth she feels as she holds her cuddly daughter or the funny expressions Dreaven makes to communicate that she doesn’t like something, such as the frosting on her birthday cake—Brittany has uncovered a world of hope.

Hope for Brittany is making sure Dreaven feels loved and happy. Hope for Brittany is keeping her heart open and not underestimating what Dreaven is capable of. While Dreaven may not be able to do something, such as communicate in the same way as a neurotypical kid, that doesn’t mean she cannot do it….it just means that her way of communicating may look different. Hope for Brittany means overcoming barriers to accessibility that she may not even realize are barriers at first.

Throughout this journey, Brittany has suffered losses, but she has also gained and learned more than she could have ever imagined. She has met and connected with so many amazing mothers through various platforms, such as breast milk donation websites, Hope for HIE, and Community PedsCare, a group run through a palliative care program near where Brittany lives in Florida. It’s been amazing to see that, no matter what happens, she is not alone in her struggles.

In addition, Dreaven has taught Brittany how to be kinder to herself. When she first entered motherhood, Brittany constantly thought, “You are a horrible mother to let this happen. You are horrible for feeling sad. Aren’t you supposed to just embrace disability, especially given your line of work?” But now, Dreaven has made her aware that, just because she feels sad at times, it doesn’t mean she isn’t grateful.

Brittany has learned that she can either let negativity overwhelm her and stop her from moving forward in life, or she can try to find the silver lining, even in the worst of the worst situations. This journey has motivated her to become a licensed mental health counselor so she can help others who have similarly experienced trauma.

Brittany has also risen as a staunch disability rights advocate, beyond what she does in her profession, sharing Dreaven’s story to show others that disability comes in all shapes and sizes. There have been times, when Dreaven has been at the public playground, that Brittany has heard people whispier, “Why would they take that girl out to play?” Brittany hopes that by continuing to take Dreaven out into the world, in spite of these comments, she can show others that, even with disabilities, Dreaven is still a person. A person who is valuable and worthy of care and support. A person who deserves access to all the same opportunities and experiences as everybody else. A person who can go to the playground or to Disney or anywhere her heart desires. A person—sometimes stubborn, sometimes cooperative, but always loved.



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