After a textbook pregnancy, I gave birth to Bronsell Emerson Sean Duncan on September 1st, 2019. He was seemingly perfect in every other way except his inexplicable inability to breathe unaided, and he presented with low tone.
Despite numerous tests, all that were clear, for unknown reasons, the neonatologists felt Bronsell had been starved of oxygen in the womb. The doctors would give my son the official diagnosis of Hypoxic Ischemic Encephalopathy (HIE), a type of brain damage that occurs when an infant’s brain doesn’t receive enough oxygen and blood. It is a dangerous condition that requires immediate medical intervention. Day after day, I could not shake this unsettling feeling inside me. I was certain the doctors had made a huge mistake!
After having several children, I felt like Bronsell was clinically different than any other child I had ever seen before. Approximately two weeks after his birth, I felt like something was wrong, and that mother intuition was kicking in. I knew that I had to dig a little deeper into this. I would spend hours doing research. You see, I knew beyond a shadow of a doubt, that my son was misdiagnosed. I spent 52 days frantically searching for an answer. I fought the doctors tooth and nail, multiple times, over them trying to discharge him. I knew if he left that NICU, Bronsell would die.
FINALLY, The genetics doctor’s got involved, and after 18 long weeks of battling for the answers, my son was officially diagnosed with ECHS1 Deficiency. Bronsell is now 10 months old, his hearing is impaired (he currently is wearing hearing aids), he never had full head control, he is non-verbal, he does not sit up, respiratory wise…he was getting worse which resulted in him getting a tracheostomy, he is now fed through a G-tube, he also has muscle spasms (dystonia), he is still in the NICU, and has never been able to come home.
Despite all of these, he is a true MITO warrior, he loves getting snuggles from his momma and daddy, loves to look at himself in the mirror, and loves getting his PT and OT. He is a very sweet and happy baby despite getting worse from having three mito crashes.
We are praying for a cure, and very hopeful that the gene therapy will come sooner rather than later. Bronsell, along with the other Mito kiddos, deserve the opportunity to live full lives. These kids are true hero’s!