A Letter to Alex's Teacher...

Alex, heterotaxy hero to HC board member and co-founder, Heather Williams, starts kindergarten this week.  So "he" wrote a letter to his teacher introducing himself...

Hi, my name is Alexander Williams, though I like to be called Alex.  I was born in June 2011 with heterotaxy syndrome.  Don't worry if you've never heard of it, most people haven't.

Heterotaxy Syndrome is a congenital disorder, meaning it was present at birth.  If you've ever studied Latin, you might decode heterotaxy as meaning different arrangement, and that's a pretty good start.

Looking at a person from the outside, it’s hard to imagine the complexity that lies on the inside.  People look symmetrical between the left and right side.  A person’s arms are about the same size and length, their feet are about the same size, and the ears are near the same spot.  The left side is much like a mirror image of the right, or vice versa.

On the inside it’s the opposite.  The left side is completely different from the right.  The stomach is on the left side of the body, the liver on the right.  Even paired organs that have one organ on each side of the body are structurally different from each other.  For instance the left lung only has two lobes, while the right has three and the right adrenal gland is triangular shaped and the left horseshoe shaped.

Heterotaxy disturbs this.  During the early days of a pregnancy (between the 3^rd and 6^th week) the internal organs are forming.  They are created from tubes of tissue that are told how to twist and turn to form the intricate chambers of the heart, blood vessels and digestive tract.  In heterotaxy, these twists and turns don’t happen the way they should, and it’s not entirely understood why. 

All those born with heterotaxy are unique, and have individual diagnoses that describe their particular condition.

I was born with multiple congenital heart defects.  I had to have two surgeries (one in Seattle, the second in Boston) to reroute all the plumbing of my heart and make sure I could get good oxygenated blood.   While my surgeons did a great job, my heart will never be quite the same as my peers.  My cardiologist says I'm allowed to play just the same as all my classmates, but need to be allowed to rest as I feel the need.  I also don't tolerate heat and cold quite the same as my peers, and might voice that opinion from time to time.

My intestines were also born mixed up, and I had to have a surgery for those.  My twisted intestines and the surgery put me at a higher risk for bowel obstruction.  Two things that can be warning signs are intense tummy pain and vomiting bright green.  My mom needs to know about those immediately.

Perhaps most importantly for you and your classroom, I was born without a spleen.  Of course one can live without a spleen (I'm five years of proof!), it actually has a very high function in the immune system.  Certain bacteria are specifically targeted in the spleen, and because I don't have one, I'm at a high risk of developing a life-threatening infection from them.  Good hand washing practices (though, I am 100% boy and still resistant to cleaning, much to my mother's dismay), covering our mouths and not sharing drinks will significantly help keep those risks down.  If I ever look feverish, lethargic or otherwise sick, please send me to the nurse immediately.

Finally, all the medical care I have received has left me a bit more sensitive than others.  I startle at loud noises (though I'm getting better) and am sensitive to people touching me.

I am looking forward to being in your classroom and starting my education journey!