Support. Educate. Empower.
Necia with her heterotaxy hero, Hallie.
Heather with her heterotaxy hero, Alexander.
How It All Began...
Necia and Heather at the 1st Heterotaxy Connection Conference in 2015.
My daughter Hallie was born with a seemingly unending supply of birth defects. It started with a bowel resection at birth, another at 2 months, then being diagnosed with multiple heart defects that lead to a diagnosis of polysplenia and a brief description that she basically had 2 left sides. She had infection after infection, illness after illness. We spent her first year with more time in the hospital than outside of it. A few more bowel resections followed and more infections, as well as symptoms nobody could tell me what they were. We moved from Utah to Nevada and shortly before her 5th birthday moved to Chicago. I started a website and later a Facebook group to keep people up to date on her never ending journey.
I look back on these years and can’t help but feel the isolation and loneliness as doctor after doctor told us they had never seen anyone like her and had no idea how to help her. I often wondered if there was anyone that understood what we were dealing with. In our small community, the only families that we could really relate to were those that were facing cancer and even then, most of them couldn’t fathom all we had been through. Those were some of the darkest, hardest years of my life.
A short time after we moved to Illinois, a radiologist doing an abdominal ultrasound asked if I had ever heard of Heterataxia. I told him no so he started to describe that Hallie was born with two left sides and had multiple spleens. Of course I knew what that was, but had never heard an official name for it. I headed straight home and googled Heterataxia but didn’t find anything. I posted an update on her Facebook group what they had said and left it at that.
I began to follow Hallie’s story when I was pregnant. I was inspired by this mother’s determination to care for her child through incredible odds. As my pregnancy progressed, I learned that my Alex would be born with heart defects. I remember thinking about Necia and Hallie and how they had been able to overcome so much, surely we could deal with one surgery. When Alex arrived we were informed that it was much more complex than a few heart defects, he had Heterotaxy Syndrome.
The days were a whirl. My son that was supposed to be born needing a “one and done” heart repair now faced several heart surgeries, abdominal surgery and possibly more. He had complications post heart surgery and came home on IV antibiotics. I’m sure I didn’t sleep for months. His care was intense and his emotional needs here high.
When he was six months old, things began to settle a little. With a bit more time on my hands and a bit more sleep, I started to think about Necia and Hallie. I headed to Hallie’s facebook group for the first time in months. The words I read there amazed me.
Surely Heterotaxia and Heterotaxy Syndrome had to be the same thing. I sent an email to Necia, and waited for her response.
Imagine my surprise to get a message from Heather saying she thought her son had the same condition as Hallie. We immediately set up a time to call. I was in the middle of Target but I was so excited that I wasn’t going to delay until we left. We quickly connected that Heterataxia was indeed Heterotaxy. All of a sudden, we weren’t alone in the world. There was someone out there that understood how daunting and difficult our journey was. With the correct name, it was amazing to go online and see what information I could find. There wasn’t a lot but for the first time I was able to find something. We quickly found a small support group and became actively involved.
We quickly found that we wanted to actively support these families. We found that the more we shared about our children’s conditions the more similarities appeared. Suddenly things that were called incidental findings were cropping up with multiple families. We had both spent time frustrated by the lack of information, support and knowledge, and now we were connecting the dots and suggesting new ideas to our physician teams. It was empowering and we wanted all heterotaxy families to have access to the combined knowledge of experienced parents.
In April 2014 we teamed up with other motivated women and created Heterotaxy Connection, by August of the same year we had received acknowledgement from the IRS as a 501(c)(3) public charity and in summer of 2015 we held our first Heterotaxy Connection Family Conference in Cincinnati, OH. Our organization has partnered with the National Institutes of Health(NIH) as a part of their Rare Disease Clinical Research Network (RDCRN)-Coalition of Patient Advocacy Groups (CPAG), we work directly in the Genetic Disorders of Mucocilliary Clearance Consortium (GDMCC) to help further research in rare diseases. Our goal is to support, educate and empower the heterotaxy community and help advance the sciences that aid our heroes in their survival.
Necia Munro ~ President of Heterotaxy Connection
Heather Williams ~ Vice-President of Heterotaxy Connection