My granddaughter Justice is now 10. As with my son Jared http://awareofangels.org/jared-undiagnosed/, Justice was diagnosed at birth as Failure-to-Thrive. Unlike the lab work and diagnostic testing which was performed on Jared 24 years earlier, very little in the way of diagnostic testing was done for Justice. The initial pronouncement of Failure-to-Thrive led to the convenient solution of nasogastric intubation. A medical process involving the insertion of a plastic tube (NG tube through her nose, past the throat and down into the stomach). Justice was nourished via this tube 24/7. She was able to be disconnected from the feeding machine, but only for brief periods of time. To be fair, medical staff sought the most immediate solution to keep her alive. But there was no additional testing for more definitive or concrete answers. Answers which might have led to a cause, maybe a solution, or for sure – affirmation.
A few years later as her formula dosage increased and modified into a regular feeding schedule, the feeding tube progressed to a surgically implanted “button” (a gastric feeding tube inserted through a small incision in the abdomen into the stomach, used for long-term enteral nutrition) which allowed her to be hooked up to the feeding machine as needed. Once she was able to intake food, chew and swallow, and before she started kindergarten – the implanted button was removed.
Justice was physically able to walk by the time she was 3. Her muscle tone, structure, and configuration is very similar to that of her Uncle Jared’s. Yet, after years of conversations with various medical staff — none of them could see a connection between Jared’s genetic condition and Justice’s “failure-to-thrive.” She received no “medicine” to improve her condition, no physical therapy, no on-going lab work or treatments. She has no prognosis as to whether or not she might pass her condition onto children of her own.
Justice had no precise diagnosis. No Chief Physician telling me that if she “lives to be ten she would be able to ride a bike.” Today her muscles are underdeveloped; she doesn’t have the strength for long walks or sustained running. But she can ride a bike. She is smart, creative, talented and happy. Her therapy consists of coming and going to school, playing during recess, swimming and riding a bike.