The story of John David
John David a picture perfect 6lbs 11oz baby boy born in 2021, from day 1 JD had feeding difficulties what we thought was just a poor latch, which quickly lead to violent vomiting episodes and just being told by his doctor “it’s just GERD” and to just thicken his formula and have him sleep elevated.
We quickly knew something was wrong at around 5 months old when we tried to start solid foods and he couldn’t swallow anything without gagging and violently vomiting, but every time we brought him back to the doctors he would just say “some kids are sensitive and picky eaters and you just have to keep trying and find what works he will grow out of this” after months of what felt like constant roadblocks no matter what we tried different techniques, different kinds of foods, different kinds of textures, we could just not get him to be able to eat solids.
After John David did not hit his 1 year milestones that’s when I knew something was wrong. I pushed for a pediatrician to look further into what was going on and he agreed there was something else going on.
From what we thought was just a bad case of GERD turned into failure to thrive, continuous vomiting, severe constipation, constant infections that has left us in and out of hospital even the simplest of colds can lend him in the hospital for days.
At this point doctors are saying we don’t have a choice that we had to start tube feeding as JD lost all his feeding cues and willingness to want to eat so an NG tube was placed. He was still losing weight too quickly but all the test results were coming back fairly normal.
After multiple hospitals admissions and fighting to get referrals into specialist, advocating as hard as I could finally getting doctors to listen and they do a multitude of testing and it comes back that John David has a chromosome mutation called 16p12.2 deletion.
https://www.ncbi.nlm.nih.gov/books/NBK274565/
16p12.2 has many features such as developmental delays, intellectual delays, autism, speech and language delays, hypertonia, feeding difficulties, small head, growth delays, behavioral difficulties, seizures, schizophrenia, hearing loss and cardiac conditions.
Now being told that his feeding tube is most likely going to become a permanent part of his life and are unsure what else they can do to help.
JD continues to fight and struggle with his feeding difficulties he recently transitioned to a permanent G-tube for feeding. Along with an autism diagnosis and global developmental delays and being nonverbal he continues to be a warrior who never stops smiling!
I never thought that in this day and age I would ever have to fight so hard with doctors to get answers and help for JD, all because he looks “so normal on the outside”.
PLEASE DON’T JUDGING A BOOK BY IT’S COVER!
Don’t stop fighting and advocating for your child you are their voice when they don’t have one. Trust your instinct when you know something doesn’t seem right and don’t just accept the easy answers, don’t be afraid to fight back!
Just because it’s rare doesn’t mean it’s impossible!