Support. Educate. Empower.
My entire life I always felt that there was something wrong with my body. I would get random pains in my stomach, unexplained chest pain, and other strange pains. However, I was never properly treated. When I became pregnant at 22 years old my pregnancy seemed to be much more painful than it should be, but they could never find anything wrong with the baby. After my son was born the pain never went away and when he was 14 months old I finally convinced my doctors to give me a cat scan of my abdomen. I will never forget calling into the office to get the results and being told, with a very serious voice, that I needed to come in and see the doctor... that something was wrong. I was pretty much told by my medical team that they had never heard of Heterotaxy, they had no idea how I was still alive, and they would no longer treat me as a patient because they had no clue what to do. I received emergency surgery for the Ladds procedure on the abdomen in July of 2011. Naturally, like any person, I did an enormous amount of research when I got diagnosed and was constantly hitting brick walls because the information wasn't really there, and I felt like I was a freak and alone. I soon stumbled across the Heterotaxy page on Facebook and immediately my life changed. I wasn't alone, there were other people just like me who were suffering just like I was both children and adults. I can truly say that without the support of this amazing group of people, who I have come to know and love as if they were my own family, I have no idea where I would be physically or mentally at this point. One of the biggest obstacles for me, besides obviously my physical health, has been my emotional and mental health since being diagnosed. My family, both my immediate family and distant relatives, have all had a very hard time accepting my diagnosis, because I technically wasn't sick as a child. Although I have tried my best to educate most of them about what is going on with me they either can't wrap their heads around it, or seem like they just don't care. I don't have the support that I should from my family, but the Heterotaxy Connection has filled that void. I have an enormous amount of gratitude to every single person in this group. Their knowledge, and support, that they have given to me is a debt I will never be able to repay. To put it simply, we are a family. We become emotionally invested in each others lives. We grieve together and we celebrate together, and I know that I will always have these people in my corner... I couldn't ask for anything more.
The families I've met through the Heterotaxy Connection are the first to understand and celebrate the milestones and miracles I've witnessed raising a child with heterotaxy. When our struggles became overwhelming they became our life preserver keeping our heads just above water in our now stormy sea. The Heterotaxy Connection not only helps with the medical information, they help families live with heterotaxy.
When my unborn daughter, Sky was given her diagnosis of Heterotaxy, it was like all of the light was taken from my world. I reached out to the Heterotaxy Connection network, and they were the light I needed to see my way through the darkness.
I will always be incredibly grateful for their help.
After receiving Tate's diagnosis of Heterotaxy after birth, I was crushed. For nine months we had expected to go in the hospital for his birth & bring him home a few days later. That isn't exactly how things went.
Shocked, grieving, scared & feeling very alone, I posted on a Facebook page for children with CHD & a fellow heterotaxy mom contacted me & got me in touch with Heterotaxy Connection. From that moment on I didn't feel so scared or alone. I had a place to ask questions without judgement, a place where other parents knew exactly what I was going through.
At a time when I felt more alone than ever, I was lucky enough to discover Heterotaxy Connection. It has become my community of support when others were uncomfortable hearing about our struggles.#sothankfulforHC
Heterotaxy Community Testimonials
Every time I pose a question to the Heterotaxy Connection group, I get a flood of helpful responses, often within minutes. It's such a powerful feeling to have a support network at my fingertips.