The Journey to Spread Awareness of HIE
This story is In Memory of Bradley and his journey with Hypoxic-Ischemic Encephalopathy (HIE) and how Ashley and her family’s lives were changed when they found out their son was diagnosed with HIE before his recent passing in March of 2022.
This April, many people around the world are coming together to recognize Hypoxic-Ischemic Encephalopathy Month. Hypoxic-Ischemic Encephalopathy is a type of brain dysfunction that can happen when there is a loss of oxygen and blood flow to a baby’s brain during pregnancy or childbirth.
Bradley’s HIE journey first began when he was just 1 year old. Ashley explains it started when there was a complication during his delivery, Bradley was unable to breathe. Doctors decided to monitor him for two months, resulting in having two surgeries, a tracheostomy to help him breathe better, and a G-tube to promote better nutrition. After extensive testing, MRIs, CAT scans, and spinal taps, the doctor concluded that Bradley was a normal and healthy baby boy. The only difference are his vocal cords. But it wasn’t until he had his first seizure in August of 2020 that changed the lives of Bradley and his family.
After Bradley had his first episode, he received an MRI scan and electroencephalography (EEG), a method used to detect brain conditions. After more testing, the neurologist concluded that he did have Hypoxic-Ischemic Encephalopathy. While Ashley understood the change this would have, she could not help feeling scared at the new challenges she and Bradley would face.
However, just like any other child, Bradley had some days that were good, and some days that were off. He would focus on taking his daily medication, attending each therapy appointment throughout the week, and focused on breathing treatments twice a day. He even made it apparent to go outside and play on the playground as often as he could!
But each day was different for Ashley and Bradley, she says it is important to be strong and advocate for your loved ones with HIE. At times you might be overwhelmed, but it is essential to find others who are caring for loved ones with HIE and get together and talk.”
Ashley shared that she had noticed one of their main challenges was finding a doctor that understood Bradley’s needs and his family’s. She says it was essential to have someone that can advocate for her family. Fortunately, it was only a matter of time for Ashley and Bradley, until they came across MGA Homecare in the summer of 2021, after working with four other companies. Their nurse Samantha had shared MGA’s info with Ashley. “When I called MGA and talked to a real live person after only the 2nd ring, I felt like my mind was already made up at that point.” Both Bradley’s nurses, Samantha, and Selena,” had both followed me from other companies before, and when I asked them if they wanted to move again, they told me wherever Bradley goes, we go. We would use MGA Homecare, for Bradley’s nursing hours.”
Ashley felt grateful she was able to get all her questions answered from MGA on time and was never left wondering if anyone would get back to her. “Communication is on point! If they ever had a question, they would always call or text, if something sounds off or if they think it would have put a kink in Bradley’s schedule or day, they would call to ask how it will affect Bradley and the family. When Bradley was sick in the hospital, they did not stop checking on him because Bradley is not in their care, they would still call, text and checkup not only on Bradley but me as well, and that felt amazing!”
But Ashley felt that it was important to “have someone who knows what you are going through, not only sympathizes for you.” Which is why she continues to recommend MGA Homecare as often as she can. “I try and meet as many people as possible that use home health care to inform them about MGA; people I meet at work or talking to people in school. We understand the struggle of finding doctors, therapists, and people who will care as much as we do, and MGA does that in every aspect!”
She also shares that aside from MGA Homecare, there are other resources and support available in her community. Ashley says, they have done “marathon runs, donate and attend fundraisers, to help spread the awareness of HIE. This year will be our second year doing the HIE run!”
The family has joined HIE support groups online and attended webinars and events. Ashley says she continues to learn more and more about the different types of levels of HIE has, they encourage others to spread awareness of Hypoxic-Ischemic Encephalopathy. They want those caring for a loved one with HIE to know that you are not alone. “Stay strong, you know what is best. Find others who are caring for loved ones with HIE get together and talk, have someone who understands.”
Ashley and her family are focusing this month on spreading awareness about HIE in memory of Bradley. They continue to advocate for those living with HIE and are grateful to be able to share Bradley’s beautiful story to educate others. MGA continues to hold Bradley’s family in their hearts.
Are you in need of homecare services for your child? Contact us today!