Our son Caleb lives with VACTERL association, an umbrella diagnosis that encompasses many different conditions affecting different systems in body. He has VACteRl, meaning his vertebrae/spine, anus/gastrointestinal system, cardiac, and renal/bladder systems are affected. To keep us on our toes, he has several diagnoses not associated with VACTERL too. These rare, complex diseases led us to travel to both Cincinnati Children's Hospital and Morgan Stanley New York Presbyterian Children's Hospital for his care. It has taken an army, whom we affectionately call Caleb's Army, to get him this far. Thankfully, he is doing great! For that, we are grateful and hope our journey can help others with VACTERL.
During his pregnancy we learned he had a single umbilical artery (most babies have two arteries in the umbilical cord). We had numerous ultrasounds and tests all of which came back normal. Caleb was born on May 18, 2011 in Austin, Texas. After a normal birth, we settled into our postpartum room with our newborn son. Four hours after he was born we learned something was wrong. He had no anus (who knew?!?)- a condition called Imperforate Anus (IA). He was immediately transferred to Neonatal Intensive Care Unit (NICU), then to a higher acuity NICU at another hospital. At two days old he had his first surgery. After a week in the NICU he came home. Over the summer, we learned more about this rare condition. Caleb was hospitalized three times that summer for urinary tract infections (UTIs)- all before he was three months old. Our local doctors had limited experience with IA. We sought help Texas Children's Hospital in Houston and learned he had the most severe type for males which involved the bladder. This led us over 1,000 miles away to Cincinnati Children's Hospital to see specialists who are the best in the world for this condition. That first year he had four surgeries- one on his spinal cord and three to repair the IA. He was diagnosed with VACTERL association as tests revealed he also had a tethered spinal cord, kidney reflux, bladder anatomy abnormalities, anemia, mild eye conditions, and cardiac issues he has now outgrown minus an innocent heart murmur.
As he has grown, we have learned more about him. This past year has been challenging. In June he was diagnosed with neurogenic bladder and must be catheterized every few hours to urinate or else he could severely damage his kidneys. In October it was confirmed that he has decreased nerve sensation and muscle tone so he wears special orthotics and tension cables to help his posture and movement. In November he was diagnosed with pancreatic insufficiency (malabsorption). In late December he had emergency surgery for an intussusception and was hospitalized for two weeks. In March we learned he has eosinophilic esophagitis.
Twelve specialists in three cities. Two therapies twice a week. Quarterly labs and tests. Eleven daily medications, vitamins, and supplements. Six caths per day. One miraculous child.
It is never boring. Having multiple rare diseases makes him a bit of a medical enigma. All we know for certain is that these are chronic conditions that he will deal with all of his life. He will need several surgeries in the future. He has a hard road ahead and he is only two.
Through it all we have had such tremendous love and support from our family, friends, employers and church. We have had moments of grace and moments of pain. We have been tested in ways we have never imagined. We have drawn strength and courage from our little man who is as tough as they come.
He may have volumes of medical charts but Caleb enjoys life! He is a fan of everything Disney Cars and Planes. He likes superheroes and often uses his super powers to the chagrin of strangers. He loves sports especially Aggie football- WHOOP! (It runs in the family.) He has two older sisters, Ava and Elle, who adore him...most of the time. You will laugh at his dancing and his silliness. He is a wonderful kiddo, a joy to be around, and we are lucky that he is our son.
"Caleb Everett Smith. Easy-going. A charmer. Funny. Stinkin' cute. One tough little guy."
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