I come to you with the most sincere heart. I am not your typical mother; I am a mother that grieves for her child. I am a mother who was unaware that the condition that took my daughter even existed. I am a mother who will use my grief to raise awareness and help save future lives.
On January 15th, 2018, I gave birth to a warrior. Mya had strength inside and out. She fought hard until the end; at just one week old she was laying on my chest and lifted her head up to look over at her daddy. She was breaking molds from the beginning. We spent a couple weeks in the hospital until she was able to get a G-tube placed due to feeding issues. She also had a list of other issues but none that would require a longer hospital stay. We had follow-up appointments with other specialists after discharge.
When we were home we embraced our princess. My younger children loved having her around. Every chance they got they wanted to be close to her; giving her snuggles. After a couple days we woke up to her stomach distended and swollen. I immediately knew something was wrong. She was rushed to a hospital that the previous gastro doctor worked for. As I looked at the doctors working so hard on her, I was approached by a chaplain. It was like an outer body experience. I was thinking there is no way that we were going to lose her.
The doctors took her in for emergency surgery only to find out she had intestinal malrotation. I had never heard of this before this moment. I was heartbroken as I watched my lifeless infant lay with her bowels distended above her abdomen. After the second surgery to remove the necrotic bowel, it was time to wake her up from sedation. Except we were left with another obstacle, she was not responding. We were told that upon the untwisting of her bowels that a clot had formed and went to her brain; which caused a stroke.
On February 15th, we said our goodbyes to our little warrior. I will never forget that moment. As it was time to say our goodbyes, my husband and our oldest daughter stayed in the room to hold her one last time. I had our family watch our youngest because we did not want him to witness the hardship, he was only 2 at the time. When they placed her in my arms I could feel how heavy she was from all the fluids in her body. Her body was shutting down. The nurse shut off her monitors and unplugged her. I whispered in her ear, “It’s okay you can let go and be with Jesus. It is time to dance in heaven.”
It was not long after that we sat there staring at her and watching her heartbeat drop… until it hit zero. I looked at my husband and at that moment we knew. I let out a loud cry and then could then hear our family cry outside the room because they knew by my cries. A mothers cry as she holds her child that just left this world is something that can’t be mimicked. As we walked out that night, carrying an empty car seat I felt like I was a shell of a person.
It took what felt like forever until I was able to function to be a mother again to our other children. I grieved so hard that I forgot who I was. I began doing research on intestinal malrotation to see if I could have prevented it. When I realized that there was no awareness day for this, I had an idea. I was going to make sure that no doctor or person was going to forget her. My pain turned into perseverance.
I set out to raise awareness, reaching out to the late Mayor Tom Henry of Fort Wayne, IN. After consideration, he and I put together the very first Intestinal Malrotation & Volvulus Awareness Day on January 15th, 2019. Mya’s first birthday was now the first awareness day. Now this was only for Fort Wayne, but the community was now beginning to be engaged, so we all celebrated together. Each year it grew bigger. I began finding doctors, strangers, anyone who would listen to hear Mya’s story.
By the next year, we began reaching out to state governors to establish the awareness day, state by state. It was not at a federal level just yet, but that was always a goal. I vowed to make sure Mya would be remembered forever. When I am raising awareness, it is like she is right next to me, guiding me and helping me. Now, with the amazing help of my new Malro family, we are making changes. I now sit on the Intestinal Malrotation Patient and Clinician Team, IMPACT. I have the pleasure of meeting with and hearing how things will change and what our next path will be. I also stay in touch with and help where I can to raise awareness for the Malro Fighter Foundation.
Through the years, I have helped grieving families, held silent auctions, hosted the first-ever Intestinal Malrotation Awareness Day event, signed up for donations for Intestinal Malrotation through restaurants, met with doctors, spoken to people from all over, and educated people on signs and symptoms.
Each year, we gain more momentum and figure out new ways to help. Now is the time to go in full gear. A few months back, I reached out to Mayor Morrell of Marion, IN. He heard my story and wanted to help. He put me in touch with a Regional Director of Central Indiana for Senator Tom Banks, and I was able to meet with him. He then put me in touch with a gentleman who has been answering any questions I may have on how to take this to the next level. He is someone in Washington, DC, so I value his input. It is now time to push for Intestinal Malrotation & Volvulus Awareness Day at the Federal level. The question I have for you is, will you join the movement and help raise awareness?
Signed a Determined Mother