“If every person could hold just a piece of this boy’s magic the world would be a much more amazing place!”— Super Isaac’s Mom
If there were ever one TinySuperhero to want on your side…Super Isaac is it! This TinySuperhero is a fighter, and nothing can stop him! (I mean, do you see how tough he looks?!)
Isaac was born with Esophageal Atresia (EA). Esophageal Atresia is essentially a birth defect in the esophagus. It develops in utero, early in pregnancy. Typically, the esophagus connects the mouth to the stomach; however in babies with EA, the connection is incomplete. Often the esophagus will either stop, ending in a pouch before reaching the stomach, or lack the connection in the middle. This means that anything that goes into the mouth (saliva, food, etc) doesn’t make it to the stomach. There are five forms of EA (differing by the levels of esophageal development) and it is prevalent in about 1 in 3,000 births.
Isaac was born 9 weeks early at just 3lbs 3oz. His type of EA was such that he had two parts to his esophagus – one coming from the mouth and one from the stomach – without connecting in the middle. They immediately began unsuccessful attempts to connect and repair Isaac’s esophagus. Unfortunately, these initial surgeries led to more complications – vocal cord paralysis, and eventually a tracheotomy. He spent his first 11 months of life in the ICU. Isaac’s life has been full of surgeries, doctors, second opinions, traveling… the list is long. Along the way, he and his family have met so many other amazing TinySuperheroes, most notably through their time at the Ronald McDonald House in Minneapolis – looks like he’s made an impact there as well!
Super Isaac just celebrated his 4th birthday! He was born 2 days before Thanksgiving, and his family has given thanks every day since. In 4 short years, he has had 21 major surgeries. He has been paralyzed and sedated for 11 weeks while his esophagus was grown for him. They travel monthly from Virginia to Minnesota to have his new esophagus stretched (it tightens due to scar tissue). He has several lung complications, is at constant risk of pnemonia, has a feeding tube, and bad reflux. Yet still, they are thankful. Every day is unpredictable, and his family has embraced the adventure. They have sacrificed so much for their TinySuperhero and when you read their story, you will hear only gratitude from them. His mom shares, “Always appreciate what you have, we have seen the worst things that can ever happen to a person, and because of that we appreciate what we have and know that in the grand scheme things could always be much worse.” (Not surprising that Isaac is a TinySuperhero, since clearly his parents are Superheroes, too!)
While Isaac’s life has been full of challenges, his story is one of hope. Isaac smiles – a lot. He is discovering his voice, speaking words, and singing! There is real hope that soon his trach will be removed, and Isaac LOVES his new little gym class! Isaac has never let EA stop him – a super power that we can all learn from.
“Isaac is Isaac because of EA – the experiences it has given him (and us) have shaped him into the amazing boy he is.”
— Super Isaac’s Mom
This is just the beginning of Isaac’s story. This TinySuperhero has more tricks up his sleeve – no doubt. Continue to watch him thrive and learn more about Esophageal Atresia here: www.savingisaac.com. January is EA Awareness Month, so spread the word!
Oh, and if you’re smitten by Super Isaac, wait until you meet his girlfriend!