Necia shares her journey to finding her voice to help others.
Necia Sabin is the Executive Director and Co-Founder of Heterotaxy Connection. Her daughter’s diagnosis set her on an unexpected path of surgeries, uncertainty, and searching for someone who understood. That search became the foundation of Heterotaxy Connection, built so families would never have to navigate this rare condition without support. Necia now leads the organization’s work in education, partnerships, and improving the experience for families and clinicians alike. She is driven by the hope that the next parent hearing the word “heterotaxy” for the first time will have a clearer, kinder path forward.
Transcript
I once was shy and introvert. I was happy with my life the way it was. I didn't have a lot of friends outside of my family, and that was okay. I did have a husband and a very active three‑year-old son, Carson. I'm part of a big family: siblings, parents, grandparents, aunts, uncles, and what my husband says are a gazillion cousins. We were close. Sunday dinner, family trips, the whole shebang. I was often talked over and had a hard time getting my thoughts out. If someone detoured in a conversation, I was more likely to avoid confrontation and go along with it.
I managed apartments for my grandparents. That was hard. Talk about a high‑conflict job. I had to really talk myself into doing what needed to be done.
Five days before Christmas in 2005, I went into labor. Just 45 minutes later, I gave birth to my daughter Hallie. The doctor said as she was born, “She's just a little peanut.” My heart sunk. I knew something was wrong. She was full term. There was no reason for her to be so small.
Hallie was inconsolable. I can still hear those cries. They only let me keep her for a short time before taking her back to be examined. That's when she started throwing up green bile.
As I sat there waiting, I knew deep down that something was very seriously wrong. They kept trying to distract me. They wouldn't tell me anything.
The whole time, I was a bundle of nerves. I felt physically sick to my stomach while I waited for an update. Within hours, they transferred her to the Children's Hospital. Less than 24 hours after birth, she was taken back for emergency surgery.
For the next 25 days, I split my time between Hallie in the hospital and a very confused Carson at home. I was struggling to learn Hallie and all of her needs. Carson didn't understand any of it and just wanted time with his mommy. I bounced back and forth in a fog, trying to be everything both of my kids needed, while recovering from giving birth myself.
Through this, I followed what the doctors and nurses told me. They told me how and when I can interact with my daughter. They informed me what the next steps are in her care. They definitively told me all the things I can't do. They even told me if she lost just one ounce, I wouldn't be able to hold her on Christmas Day. I was so confused. Why did a single ounce make such a difference?
I was frustrated at how little sense some of the things made to me, but I didn't question it. That might lead to conflict.
Eleven days in, we finally got to feed her small amounts. She did great! Hallie was eager for more. Then they told me, “Don't be surprised if when you come in tomorrow she has a feeding tube.”
What? How did that make any sense? My logical mind said that it made more sense to try letting her to eat by mouth first and then, if that didn't work, pivot if needed. My introverted side said, “Don't make an issue of it.”
Hallie's nurse could tell I was frustrated. She got the doctor to come talk to me. I remember trembling and feeling hot and cold all over at the thought of this conversation. For the first time, I advocated for my daughter and spoke up.
The doctor heard me. I'm pretty sure that was just protocol. He agreed to placate me and let her show us what she could do. And wouldn't you know it, she didn't need a feeding tube. I realized then that what I had to say mattered. They may know medical terms and charts, but I was the one who knew my daughter.
This was a turning point for me. I threw myself into learning Hallie's condition heterotaxy. Essentially, her organs formed in the wrong location and incorrectly. She has problems with every single major organ except for her gallbladder. That one is quite lovely. She even has multiple spleens.
They say there's no better investigator than a mom with a sick child. I immersed myself in all things medical. I learned the language and how to interact with medical professionals. I figured out how to navigate insurance. I listened to Hallie's body and what it was telling me. I even got a call once from a surgeon in the ER wanting to consult with the world's foremost expert on Hallie.
Along the way, I met other heterotaxy families. I saw how much they struggled like we had. It broke my heart to hear how dark and lonely their journeys were. So I decided to start a nonprofit, Heterotaxy Connection to help our community. Our mission is to support, educate, and empower families impacted by heterotaxy, while also engaging medical professionals to further care.
I didn't know what I was doing. I just knew that our families deserved more. So I figured it out along the way, gaining confidence in myself as I navigated each hurdle. We started with just a small handful of families and now have over 3,000 from 25 different countries. I work with clinicians on a regular basis as we strive to make things better for our kids. I found my voice and I have a platform, as does Hallie who has defied the horrible odds and is almost 20 now.
There is absolutely nothing that will make the suffering Hallie has gone through worth it, but the work that I do does give it meaning.