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Super Henry

The TinySuperheroes team is so excited to welcome Super Henry to the squad!  Super Henry was born in October and has been showing the world his super powers ever since!

When Super Henry was still growing inside his mom Jamie, it was discovered that he would meet the world with a different anatomy than most; however that wouldn’t stop him from being a fighter and taking everything that he was faced with in his stride.  When Jamie was about halfway through her pregnancy with Super Henry, it was discovered on a routine ultrasound that Super Henry had some challenges he would have to face: a hole in his heart, fluid around his kidneys, possible cyst on his spine, toes fused together, and a shortened nasal bone.  Super Henry’s mom and dad were worried about what this would mean for their son, but hopeful for the best.  After an amniocentesis and a few more ultrasounds it was determined that Super Henry had a chromosomal disorder that would present with some challenges for Henry, but he was a fighter and his mom and dad knew he’d be able to battle whatever he was faced with.  In late October Jamie was induced and in labor with Super Henry for 21 hours.  After having an epidural and Pitocin to speed up labor, Super Henry did not like that combo and his heart rate dropped into the 70s.  This was so scary for his mom and dad, but a quick decision to give Jamie some oxygen and deliver Super Henry via emergency c-section allowed him to be born safely and without any other risks of prolonging his labor and delivery.

Super Henry was born on October 27th, 2016 and got to show his super powers off to the NICU team once he was born.  Just like he did in his mom’s belly, Henry came out kicking and punching and ready to fight anything that he was put up against.  Henry was in the NICU for 2 months before he was able to go home.  In the NICU Super Henry had a major Tetralogy of Fallot spell causing him to go limp and his coloring go from newborn pink to as purple as a plum with oxygen sats in the low 30s.  After a code blue and lots of bagging to help Super Henry breathe he was back to normal, however, there were lots more tests that needed to be run to see what was to be done to help Henry.  Super Henry had lots of obstacles he overcame while he was in the NICU, one of them being having a g-tube placed at one month old to help him eat so he didn’t have to work so hard to do it himself.  This allowed Super Henry to eat and get stronger and stronger.

Super Henry’s super powers are Tetralogy of Fallot, thinned out Corpus Callosum, Chromosome 9q34-31.3 duplication, Chromosome 8p23.3 deletion, Optic Nerve Hypoplasia, duplex kidney, and has a trach.  Since he was born he has had multiple surgeries to help fix the challenges that he’s been battling against, including 3 supraglottoplasty, epiglottopexy, tracheostomy surgeries all on his airway, along with a g-tube placement and nissen fundoplication.  He is a true fighter and continues to amaze his parents, family and friends each and every day!

Super Henry’s next big step is a major heart surgery which will close the hole in his heart and widen his heart valve.  Once he crushes this surgery and continues to grow and get bigger he will have many heart valve replacement surgeries to follow.  Super Henry may have to use his superpowers for a possible kidney surgery to fix any backflow and swelling he is having and to fix the curvature of his genital area as well.  Super Henry gets a lot of help and monitoring from his wonderful doctors and nurses, especially focusing on his upper spine and using MRIs to check to make sure abnormalities don’t present themselves.  Super Henry continues to grow and hit milestones each and every day; he is currently working on strengthening his neck muscles, getting more familiar with his mouth, and using his super-powered helmet to help round out his head.

Super Henry is a fighter and such a strong and determined little guy!  His superpowers have given him the strength to overcome everything that has been put in front of him and he keeps knocking out anything that seems to stand in his way.  You can follow along with Super Henry on his journey here.  We are so happy to have Super Henry on our squad!

2 replies
  1. Sarah Potts
    Sarah Potts says:

    So super proud of you Super Henry! Your amazing. I pray for you, your mommy, and daddy. Sending tons of hugs and kisses.

    Reply

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