DAILY LIVING & MOBILITY

Little Survivor!!

Spina Bifida (SB)

Joseph & Desiree Remillet

Meet Maddux...

At 22 weeks gestation, Maddux and his mama underwent fetal surgery, or surgery in the womb, to repair the opening on his spine (L1) due to the neural tube defect, spina bifida. He was born prematurely 8 weeks later at 30 weeks and at a week old, required immediate surgery (unrelated to spina bifida) for a perforated bowel and had an inch of small intestine removed. After 10 long weeks in the NICU, Maddux finally went home! At 5 months old, after monitoring his ventricles since he was in the womb, his neurosurgeon decided it was time to address his hydrocephalus and performed an ETV (endoscopic third ventriculostomy) to relieve the pressure on his brain. During this time, several doctors mentioned that Maddux's long bones were shorter than normal and suspected he had a form of dwarfism. At 9 months old, a geneticist confirmed that he has achondroplasia, the most common form of dwarfism. So many things started to make sense now. From his hydrocephalus to his breathing issues, not all of this was directly related to his spina bifida but instead BOTH diagnoses. Maddux has undergone nearly 10 surgeries, 6 of which have been brain surgeries. After a nasty 4-month battle with bacterial meningitis at around a year old, Maddux had two VP shunts placed in his brain to relieve pressure caused by fluid build up. Now, this 2-year-old is thriving! He is currently learning how to maneuver his Bumbo wheelchair and only time will time will tell if he will walk with assistance. Maddux has not only proven that he is a survivor but that he is also a true fighter! #madduxstrong

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