Miranda was born 5 weeks early on January 15, 2004. When she was born we were unaware of any defects. She was tiny but was perfect. A few hours later the doctor came in and told us she had an imperforate anus and our journey began. Her first surgery came a week later at Texas Childrens Hospital in Houston Texas. After multiple test they found she had only one kidney, boggy bladder, and a very tiny urethra. After biopsies were done they also found she had Hurschsprungs disease which is a disease of the intestines where no nerves formed in the intestines. They worked for several months hoping that with therapy her intestines and rectum would function correctly. This never happened and at 3 months old she returned to surgery for an ileostomy. Miranda was very sick and hospitalized for most of the first year of her life.
She had 10 surgeries her first year for motility issues. At 2 years old one of her doctors in La decided that it was time to do a total colectomy (removal of large intestines) and pull her small bowel through to rectum and hopefully she would live a normal as possible life. So we did it. Most children after this surgery have issues with diarrhea constantly. This was not the case for Miranda. She continues to this day with no bowel control and issues with constipation being taken to surgery multiple times a year for stool removal from intestines. As I said above Miranda was also born with one kidney and a really non functioning bladder as well. They found later on that the same hurschsprungs that is in the intestines is also in the bladder. (This is super rare, usually only affects one organ or the other. Hers affects multiple organs). When Miranda was 4 she had bladder augmentation surgery and reimplantation of her kidney due to constant infections and kidney failure due to the bladder continuously pushing urine back into her kidney. This surgery was unsuccessful and we went back to surgery 8 months later for another bladder reimplantation. So throughout the years Miranda has had multiple surgeries for motility issues.
Fast forward to today. Miranda was never ever expected to live as long as she has. According to her GI Doctor she is in the first generation of children to survive megacystic megaureter hypoperstalsis syndrome. Every surgery or procedure was done just to make her comfortable. So now she is 12 years old and puberty has set in and there are new issues. So this Thursday June 2nd we will be going into surgery for a multi organ surgery. They are going to operate on her kidney and cut out the bad part of the ureter and hopefully reimplant again where it works without the nephrostomy tube she has had for years. They will then take a piece of small intestines and augment the bladder (open the bladder and enlarge it using intestines) again and fix the access that leaks all the time at the belly button. They they will then give her an ileostomy. All these years she has had no bowel control and little function. The doctors say for now she will have an ileostomy but hopefully when she becomes an adult she may be able to have another surgery to correct this as well. Finally the plastic surgeon will come in and fix the deep surgical incisions that she has from previous surgeries. This surgery is scheduled to last 10 hours. She will then go to the PICU for serval days of recovery. Then the the pediatric floor for several further days depending on how her healing goes.
Please keep our family and especially Miranda in prayer during this time.
If you would like to donate to the medical expense fund for Miranda my mom Sharon Croft has set up a GOFUNDME for her at https://gofundme.com/miracleformiranda