Frequently asked questions.

What is MMIHS?

Megacystis Microcolon Intestinal Hypoperistalsis Syndrome (MMIHS, Berdon Syndrome) was first described by Walter Berdon in 1976.
It is an extremely rare disorder that affects the bladder and gastrointestinal system. The symptoms are explained by the break down of the name. MEGACYSTIS - enlarged bladder, MICROCOLON - small large intestine, INTESTINAL HYPOPERISTALSIS - very slow and no movement in the intestines. It is an impairment of the muscle in the small and large intestine and the bladder.

What challenges does Maliyah face?

Maliyah has varying degrees of the above indicators. One of the very first signs was when I went in for an ultra sound at 31 weeks and they noticed and enlarged bladder. She was then born at 34.5 weeks. For the first month Maliyah was not able to tolerate any breast milk (with the exception of 5 days during the second week). She had what they called a psuedo obstructrion - meaning it acted like an obstruction but there really was none. Her barium enema noted very slow movement in her intestines. She had an enlarged bladder and a foley catheter was placed.

Currently, Maliyah is able to eat, drink, urinate, and go potty with the assistance of a stool softener. She does have mild hydronephrosis (swelling of kidney due to a build up of urine) in her left kidney which isn’t too big of a concern at this time. She is currently on 12 hours of TPN (total parental nutrition - IV nutrition) at night 7 days a week. She is not able to eat any foods with starch and or high in sugar whether it is a processed or not. This leads to us getting really creative with her choices of food. We find that if she does eat any of above foods she gets significantly bloated, doesn’t have an appetite and loses weight. This is the reason why we are currently on TPN.

What is TPN?

TPN (total parental nutrition) is nutrition given directly into a person’s vein who can not get the required nutrition from their GI tract. It delivers already broken down carbohydrates, proteins, fats, vitamins, electrolytes, minerals, and water on the cellular level to bring nutrition to one’s body.