My name is Laura Torres and my daughter is Emma, she is 4 years old and has MMIHS.
Emma, was born October 10, 2014 weighing 9 lbs 12 oz. Before her birth, several level 2 ultrasounds indicated she had an enlarged bladder that didn’t drain, when she was born, the doctors got over 500 ml’s out of her bladder.
The day after she was born, she had surgery to correct a malrotation in her gut at the University of Chicago. After 7 weeks of testing and theories, and trials and errors, a resident who had just read about MMIHS in a medical text mentioned it by chance and Emma seemed to fit. So after several tests and much research, Emma was was finally diagnosed with MMIHS on December 3rd, 2014. She spent 6 months in the NICU.
Emma is the epitome of a girly girl. She loves everything pink and loves her baby dolls, she even pretends to breastfeed them. She thinks she’s everyone’s doctor. She has a play medical kit and if any of us so much as cough, she runs and gets it and gives us a check up a la Doc McStuffins which is her favorite show. She’s very empathetic towards other kids, she can’t stand to hear a baby cry, she gets so worried.
Emma has had 7 central lines, 11 picc lines, a colectomy, has a jejunostomy, and a g-tube for bile drainage. Her stomach is so sluggish that she rarely passes anything through to her ostomy. She has spent over 200 days inpatient. Currently, Emma is 100% TPN dependent. She has a neurojenic bladder so I cath her every 4-6 hours around the clock. She’s on blood thinners because she’s had 7 broviac central lines and 13 picc lines, and that has created a few clots, but apart from that, she’s pretty stable right now. She’s just a spunky kid and very much your typical 4 year old, just with a few extra buttons!