Written by Rachel Rojas
Emi was born with omphalocele, a condition where her intestines and sometimes other organs are inside the umbilical cord. She had her first of many surgeries the following day where we would learn her large and small intestines were not connected. They removed some damaged small bowel and reconnected her as best as they could. We also learned her stomach was on the opposite side of her body “heterotaxy”. 6 weeks later she would have another major surgery bowel perforation reconstruction and removal of more small intestine that had died and was not functioning.
Almost immediately, we noticed Emi was always crying and seemed to be in a lot of pain from what we thought was just colic or her recovering from back to back surgery. After a few months we knew it was more than acid reflux which was what her GI at the time suggested it was. We went on like this for a year and a half. Emi cried all day and all night for hours at a time and would have diarrhea. We would go through a bag of diapers in 36 hrs. She didn’t gain weight and struggled to eat. A few months after, I confronted her GI at the time and suggested we look into why she was in pain and not gaining. He said there “was no real explanation for this. She is going to hurt. This is just her life.”
A few weeks later she was at a routine appt. and started vomiting stool. Emi had an impaction that almost ruptured her intestines and left her with a colostomy bag for the next couple of yrs. During this surgery, more bowel and colon had to be removed. She underwent surgery for ileostomy a yr after colostomy due to repeated prolapses with her intestine.
Photo Courtesy of Emi's Courage
Photo Courtesy of Emi's Courage
My Emi still struggles with eating. She is not able to absorb, digest and gain weight well. We have always struggled with her weight which gave her the label, failure to thrive. She also continues to have pain that to date has no explanation nor relief. Now, at almost 5 yrs old we have a long list of ailments with no reason or successful treatment. Last November she underwent colostomy reversal in Cincinnati Ohio where they again removed about 6in of intestine that was dead. They reconnected her small bowel (what was left) and colon (she had less than 25% of colon left) and it seems not to function too well for her now. We are finding now she has functional issues with her stomach, colon, intestines, her body can not sustain itself nutritionally, we do not know where the pain is from and have struggled to get this figured out. We know she is in “intestinal failure”. She has over the years seen several doctors and has had several surgeries & procedures, scans, exams, testing, scoping, nutritional support (tpn), weekly labs, several treatment plans but no answers.
Her most recent surgery, 3/30/18 was when we discovered her stomach was folded into a V shape and cocooned with other organs and scar tissue. This was not previously diagnosed or noticed by any medical team she has seen in the last 4 yrs. We do not know how long her stomach has been this way. We have since found several issues with Emi’s anatomy and some organs and are working to figure out how and if they work well for her. We are limited on information with her because doctors have not seen all these issues in one child.
My Emi does well in spite of all she goes through and continues to battle pain daily. We are in a slow intestinal rehabilitation phase at Cincinnati children’s hospital in Ohio. We don’t know when we will go back home to TX.
I know we are where we need to be, and I pray we can get answers for her here. We have put all our faith in God and what he can and will do. Emi’s courage, laugh, smile and resilience give us hope.
I still continue to look for another child like Emi or at the least has some of the same issues as her.
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