​​HETEROTAXY CONNECTION

Support.   Educate.   Empower.

Our Heterotaxy kids show us that miracles really are possible...it teaches us that things do not have to be typical to work. I hope to teach my Heterotaxy warrior that life is always going to throw curve balls and if he has survived the hurdles his own body has thrown at him then he can most definitely survive anything the world will throw at him! 


​Jennifer

Heterotaxy is beautiful because it gave me passion! After losing my daughter to complications from her heterotaxy. I knew I wanted to go into high risk obstetric ultrasound after many of my daughter's defects were missed on her ultrasounds. I also want to provide compassionate and sincere care to my patients that I feel I didn't receive from some in my own care. I strive everyday to raise CHD and heterotaxy awareness in all the doctors and other caregivers I meet. I'm so thankful that I got to have my angel for even the short time I did her existence made me who I am today. :)


Vanessa

I will praise You, for I am

fearfully and wonderfully made;
Marvelous are Your works,
And that my soul knows very well.

-Psalm 139:14


Teresa

The beauty of God's nature. That despite being formed wrong at the very start, his body didn't give up, the cells couldn't find the connections they needed so they created new ones and found a way to survive. The plumbing might be all wrong but he is alive.


​Kate

Raising a child with Heterotaxy has changed my whole life and every single aspect to it. By constantly changing face and expression - my daughter has negotiated with Death several times and jet been the strongest child I have ever meet - Heterotaxy has had me redefining values, beliefs and assumptions about life over and over again. Few conditions provide such a broad spectrum of experiences as Heterotaxy. Just as much as fear, and suffering, is associated to this condition of embodied anarchy, there are also glorious moments of intense happiness, maybe unique to the deep insight of Life as an completely unpredictable, and miraculous, Journey.


​Nette

The connections! Hence why it's called the "heterotaxy connection." I have made lifelong connections thanks to hererotaxy. I hate that it's a shared topic, but knowing I have someone out there that cares deeply for my child on multiple levels, is so incredibly comforting.


Danielle

That my daughter's mixed up anatomy is created perfect enough for her to live 3.5 years without her even knowing she is any different. She has no clue.


Ashley

Heterotaxy is beautiful because it's how my son was created and anyway God gives him to me I will love with all my heart! 


Lincoln

The enormous amount of strength & courage our children have is beautiful. That first smile on the face of your little one after they have been through another operation is beautiful. Winning with the fight for life is beautiful.


Kell

Heterotaxy is beautiful because... I often imagine how his little body was forming those first few weeks inside the womb and even though everything is not where it is supposed to be everything is where it needs to be to work for my son.


​Amanda

I think it has taught me (having a son who passed away due to complications from heterotaxy) a lot about gratitude. Gratitude for time, for life and living life, and for love. You learn to love deeper and to appreciate your time with your loved ones so much more. What a gift that is.


​Kelly

All too often, heterotaxy is accompanied by struggles, pain, and even heartbreak. We challenged our community to stretch their hearts and minds a little... and share something about heterotaxy that makes it beautiful.  Here are their amazing responses...

Just how amazing and strong my son is and has become. I truly had no idea how rare Heterotaxy was until I joined this group! I have learned more from this group in the last few months than I ever knew and I am so very thankful! X


Caroline

Last week, a friend accidentally called my son a monster. She didn't know she was referring to him, she just knew that organs flip flopped sounded monsterous and different. That taught me something important: his uniqueness may make him imperfect in the eyes of others, but it's what makes him stand out. Heterotaxy is beautiful because it makes every one of those with it just a little more perfectly imperfect.


Hannah

The beauty of God's nature. That despite being formed wrong at the very start, his body didn't give up, the cells couldn't find the connections they needed so they created new ones and found a way to survive. The plumbing might be all wrong but he is alive.


​Monica