Prince (USA)

When I was pregnant with Prince I had an okay pregnancy. Besides being gestational diabetic. I went to all of my appointments during my pregnancy, took my prenatal vitamins, and also in my 3 trimester took metforman for the gestational diabetes.

When prince was born he was 39 weeks via emergency c-section. He was 11lbs 3oz apgar scores of 5 and 7. He was also hypoxic and his sugars dropped to 10, he was immediately transported to a hospital with a NICU as the one I delivered at did not have one.

From the beginning they said Prince had hypotonia (low tone)  and he lacked the natural suck and swallow reflux resulting in a ng tube being place at just a week old. Prince had a feeding intolerance since the beginning. He would constantly throw up and had a cows milk allergy. He ended up staying in the NICU for the first two months of his life and finally came home with a gtube and was gtube dependent.

From just two months old up until exactly a year old Prince has been in and out of the hospital numerous times for failure to thrive, respiratory failure, and poor weight gain with stays as long as 3-4 months he had a tracheostomy placed after he didn’t recover well from a surgery to open up his airway.

The recovery from the surgery and the two bacterial infections he contracted caused him to crash hard, as he was put on life support 3 times. Just in February 2020 around his 1st birthday we got the genetic diagnosis of the ECHS1 deficiency, it came from both dad and I as we also found out at that time that we are both carriers of the gene.

Also ,while in the hospital when we got that news they also seen that Prince’s brain scan was worrisome, as his brain has shrunk a significant amount since birth. Prince also has auditory neuropathy and not diagnosed but also has vision issues as he does not track he constantly stares. He also has dystonia,  his muscles are almost always tense. Despite all that my little man has been through he is a strong little fighter.

From the experience from birth, genetics may think his is onset is neonatal and they gave us a prognosis of 1-2 years of age I would love to see what the research could do for my little mito warrior, and all the other strong mito warriors still fighting.

Prince is currently unable to sit up, walk, or talk. However he never phases to show use he is paying attention with all his cute facial expressions and hand gestures. He is currently on hospice and our focus is to keep him loved and comfortable.