Jude, a Medically Complex Warrior
My sweet Jude Hayden was born 3 weeks early and was pulled into this world perfect, chubby, and happy to have more space. He’s the 4th and final kiddo in our family. My little warrior led, for the most part, a typical first year of his life. He struggled with hypotonia, developmental delays, and multiple brain issues, including BESS with enlarged ventricles, macrocephaly, and delayed closure of fontanelles. Still, he remained at home with us until 3 days after his 1st birthday when our world turned upside down due to hypercalcemia and nephrocalcinosis, and he continues to struggle to right itself.
Jude is still searching for his primary diagnosis. Still, he’s up to 27 diagnoses as we search for a definitive answer. Jude’s been hospitalized multiple times, now has a g-tube, has had many procedures including a bone marrow biopsy, numerous MRIs, has lab work done monthly, and a diagnosis for pretty much every body system, including some that make him a medical zebra, like infantile scoliosis and hereditary Alpha Tryptasemia Syndrome. He struggles with dermatographism and eczema, which led us to bamboo.
He continues to struggle to grow related to his endocrine disorders. Still, Jude is happy, and he continues to amaze us each and every day. That’s all this mama could ever hope for, so if that collective diagnosis never comes, my sweet, sweet medical mystery boy will always be stealing hearts.
Jude has inspired so many, but he led my heart to start a 501(c)(3) nonprofit in his honor called Jude’s Totally Tubular Packages, which sends care packages to other tube-fed kids.
