We had decided to name her Faith before she was even born, and what a poignant reminder her name has been.

Faith was born six weeks premature with multiple congenital anomalies, including a cleft lip and palate, a hole in her heart (VSD), enlarged kidneys (hydronephrosis), dysphagia, and low tone. Faith saw a geneticist for the first time at ten days of age, who ran an array of tests. These, like all of the genetic tests since, came back normal. The only test available at this time that Faith has not had is the prohibitively expensive full genome sequencing. She is on the waiting list for the NIH Undiagnosed Disease Program. We refer to Faith as our SWAN, an acronym standing for Syndrome Without A Name.

Faith was diagnosed with severe autism at age three, thought to be secondary to her unknown syndrome. At age four and one-half, Faith had a routine pyloroplasty which resulted in total GI failure. She spent the majority of the next five months inpatient, with three months on TPN (IV nutrition), two bouts of sepsis from central line infections, and the placement of a jejunostomy feeding tube. Very slowly, we were able to wean her off TPN and onto continous JT feedings. Since that time, Faith has battled nearly constant urinary tract infections, pain of unknown origin, painful J stoma excoriation, increasing seizures, and headaches. She has also undergone back surgery for an occult tight cord, a vesicostomy for easier catheterizing, and a cecostomy.

Despite all of her challenges, Faith is a sweet, loving little girl. She has always been very verbal in her own language, but she is learning more and more English words, signs, and how to use her communication device. She has begun to read and is very proud that she can print several letters. Faith loves to sing and dance along with Barney, to play hide-and-seek with her toys, to chase her little brother, and has become very engaged with her Tubie Friend (a bear with feeding tubes like her). Through the ups and downs of caring for her and not knowing what the future holds, we have learned not to lose Faith.

Ann Johansson, RN, BSN

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