Garrett was born in Guam, a full term 8 lb 4 oz baby boy on January 28, 2014.  Garrett did not stool within the first 24 hours which led him to be evaluated in the NICU.  After a grueling two weeks of daily lab draws, forced feeds and countless radiology images.  With the shirt on our backs we flew Garrett to Hawaii in hopes of finding out what was causing our son to spit up his milk and not stool.  In Hawaii Garrett went through a process of clearing out his digestive system, lab draws, radiology images and was suspected to have Hirschprungs Disease.  He went under anesthia to have biopsies of his intestine to determine which portion was operating properly.  The decision would be made under anesthia to place an ileostomy.  Garrett was determined at that time to have Total Colonic Hirschsprungs Disease; which means that his colon and large intestine do not operate.  Once diagnosed and with ileostomy Garrett continued to grow in the NICU untli he reached his proper feeding at 3 months of age.  After all of these months hospitals, bedside care, pumping breastmilk and constant medical research;  his father and I were ecstatic to finally be able to take our baby home.  We returned to California to continue Garrett’s medical care.

 

Once in California Garrett continued to grow and develop until his stoma began to retract; slowly blocking all stool from exiting his body.  Our medical team here had us dilate him for a month before agreeing to surgically takedown his current ileostomy and place a new one that will allow his body to stool.  Garrett continued to grow and over the course of time he has contracted the common cold or stomach virus that has led him to many hospital visits and inpatient stays.  The reason is because he dehydrates faster that a person who operate with their colon and large intestine.  The main function of the large intestine/colon is to absorb water and salt for the body.  He is a miracle in himself that he maintains over the 50% percentile in children his age for all developmentally charted pediatric criteria.  Yet, when he catches an illness it can lead to life threatening conditions. 

It is time for Garrett to have his ileostomy taken down and a Pull Through surgery performed.  This is a life threatening and painful procedure, which entails meticulous post op care.  Post op Garrett will learn to stool like you and I.  He will have dilations to keep the scar tissue from closing his rectum; wash outs to assist with the frequency of stooling; skin breakdown on his bottom and will learn how to cope with this new way of living.  It is critical that we ensure that Garrett’s diagnosis is accurately confirmed and that the appropriate Pull Through Surgery method is performed.  (The experts we see in California cannot confirm his diagnosis as accurate) Because Hirschsprung’s Disease is rare, very few people specialize in the treatment plan for it.  We have confirmed a plan to diagnose and treat Garrett with the Colorectal Center in Cincinnati Children’s Hospital.  It is there in which the doctor’s, pathologists and nurses specialize in Hirschsprung’s Disease and the management of this disease. 

 

In our efforts to ensure Garrett has received the best medical care we have embarked on an unforgettable and turbulent journey.  From islands and across oceans; we have searched far and wide to arrive in the right place at the right time; to meet with medical teams to assist us in the proper care for Garrett.  When your child is sick you will stop at nothing until they are well.  When the medical professionals cannot tell you what is wrong, you will educate yourself with every resource you can find; until you can properly advocate for your child and his needs.

The cost of flying, renting a car, housing and everyday necessities surpasses what we can afford and we are reaching out for help.  Over the past year and a half we have gone into debt and worked hard to keep the medical bills at bay.  We have recently been hit with a $16,000 medical bill from Garrett's Nicu stay in Guam.  Needless to say we will continue to do everything in our power to navigate well enough to give Garrett the best treatment for his condition. 

 

If you will donate anything to help us in this journey, we will be very appreciative.  Many families that have children with rare special needs often feel alone in the struggle, lost in a sea of medical opinion and buried in financial ruins.  When you share Garrett's story you may indeed share it with a family who needs to hear that there are possibilities if you continue to fight.

 

Thank you for taking your time to be a part of Garrett’s journey.

 

Love,

Alan, Jennifer and Garrett